Sandra Julsen Hollung

• Kildal, Olav Aga; Hollung, Sandra Julsen; Jaioun, Keson & Andersen, Guro Lillemoen (2026). Muscle tone and pain in children with spastic cerebral palsy. Developmental Medicine & Child Neurology. ISSN 0012-1622. doi: 10.1111/dmcn.70548. Full text in Research Archive Show summary

  Aim To investigate associations between muscle tone measured using the Modified Ashworth Scale (MAS) and pain in children with spastic cerebral palsy (CP). Method Children (aged 0–17 years; mean age 10 years 2 months) in the Norwegian Quality and Surveillance Registry for Cerebral Palsy with physical therapy assessments between 2018 and 2021 were included ( n  = 1188; 42.3% female) in this population‐based cross‐sectional study. Logistic regression analyses were used to examine the association between MAS scores and pain. Odds ratios (ORs) with 95% confidence intervals (CIs) were reported. Results Pain was experienced by 41.4% ( n  = 492). Risk of pain was highest in children classified in Gross Motor Function Classification System level V (OR = 1.81, 95% CI = 1.21–2.70) and Manual Ability Classification System level V (OR = 2.00, 95% CI = 1.25–3.16), children with bilateral spastic CP (OR = 1.34, 95% CI = 1.06–1.68) and increasing age (OR = 1.12, 95% CI = 1.09–1.15). Pain interfered with sleep in 24.8% ( n  = 122) of children and activities of daily living (ADLs) in 53.0% ( n  = 261) of children. An MAS score of 2 or greater was recorded in 42.3% ( n  = 502), most often in the ankle plantar flexors. Adjusted analyses showed that the highest MAS score was associated with pain interfering with ADLs (adjusted OR = 1.40, 95% CI = 1.00–1.96), and an MAS score of 2 or greater with higher pain intensity (adjusted OR = 1.2, 95% CI = 1.01–1.42). Interpretation Pain is common in children with spastic CP, frequently disrupting sleep and ADLs. Higher MAS scores are modestly associated with increased pain intensity and interference, highlighting the need for targeted pain screening strategies.

• Stadskleiv, Kristine; Knudsen, Maja Jasmin; Hollung, Sandra Julsen & Andersen, Guro Lillemoen (2026). Parental Perceptions of Neuropsychological Assessment in Children with Cerebral Palsy. Developmental Neuropsychology. ISSN 8756-5641. p. 14–14. doi: 10.1080/87565641.2026.2694317. Full text in Research Archive Show summary

  Norwegian children with cerebral palsy (CP) are offered regular neuropsychological assessments, but little is known about parental perspectives on the assessments. Survey responses from 181 parents were compared with data in the Norwegian Quality and Surveillance Registry for Cerebral Palsy. Parental satisfaction was not associated with the child’s IQ, 94% of the parents considered the conclusion accurate/nearly accurate, and 65% believed that the assessment contributed positively to follow-up. Among 63 children reported by parents as having normal cognition, 62 had normal IQ. Among 55 children parents perceived as functioning significantly below age-expected, 32 (58%) were registered with an intellectual disability.

• Zafari, Mevand; Toraman, Robin Paalgard; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2026). Cerebral parese blant norske barn med ulike fødselskarakteristika. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. doi: 10.4045/tidsskr.25.0566. Full text in Research Archive Show summary

  Bakgrunn og formål: Formålet med studien var å undersøke trender i forekomsten av cerebral parese etter fødselskarakteristika blant norske barn født 2002–18, samt sammenhenger mellom fødselskarakteristika, undertyper av cerebral parese og grovmotorisk funksjon. Materiale og metode: Data fra Norsk kvalitets- og oppfølgingsregister for cerebral parese ble koblet til Medisinsk fødselsregister. Forekomsten av cerebral parese per 1 000 levendefødte ble beregnet for kategoriene svangerskapsalder, fødselsvekt og små for svangerskapsalder. Trender ble analysert med logistisk regresjon, og fordeling etter undertype og grovmotorisk funksjonsnivå ble analysert ved hjelp av deskriptiv statistikk. Resultater: Blant 1 006 537 levendefødte barn fikk 1 897 diagnosen cerebral parese. De fleste barna med cerebral parese var født til termin med normal fødselsvekt. Forekomsten av cerebral parese var høyere blant barn som var født prematurt, med lav fødselsvekt, og som var små for svangerskapsalder. Forekomsten blant terminfødte gikk ned fra 1,30 per 1 000 levendefødte i 2002 til 0,90 i 2018 (−3,4 % per år, oddsratio (OR) 0,966; 95 % konfidensintervall (KI) 0,954 til 0,978), mens forekomsten blant premature var stabil. De fleste barna hadde spastisk hemiplegi eller diplegi og lett grovmotorisk funksjonsnedsettelse på tvers av fødselskarakteristika. Fortolkning: Forekomsten av cerebral parese blant terminfødte har gått ned, men de utgjør fortsatt majoriteten. Barna hadde hovedsakelig mindre alvorlige undertyper og milde grovmotoriske funksjonsnedsettelser, på tvers av fødselskarakteristika.

• Goldsmith, Shona; McIntyre, Sarah; Badawi, Nadia; Dan, Bernard; Day, Steven & Himmelmann, Kate [Show all 10 contributors for this article] (2026). The cerebral palsy directed acyclic graph: A structural causal model of aetiology. Developmental Medicine & Child Neurology. ISSN 0012-1622. doi: 10.1111/dmcn.70267. Full text in Research Archive Show summary

  Aim To describe the development of the initial version of the cerebral palsy (CP) directed acyclic graph (DAG). DAGs are visual representations of causal assumptions and powerful tools for representing and communicating complex causation. Method An international working group of clinicians, researchers, and individuals with lived experience developed the CP‐DAG, using methods adapted from the US National Aeronautics and Space Administration's risk modelling approach. The team developed a network of nodes and causal links spanning prenatal, perinatal, neonatal, and postneonatal pathways, along with a node dictionary (‘DAGtionary’). Iterative drafts were created with feedback incorporated from presentations at international meetings and workshops. Results As of August 2025, the CP‐DAG includes 106 nodes and 378 links, yielding a network density of 6.8%. It spans known and hypothesized causal pathways across biological, clinical, and social domains. The accompanying DAGtionary contains concise definitions and references for each node, totalling 210 citations. Interpretation The CP‐DAG provides a visual, evidence‐linked representation of causal reasoning in CP. It offers a foundation for identifying knowledge gaps, directing future research to under‐researched areas, and, eventually, for probabilistic modelling. This initial version is intended as a starting point. We call on the global CP disability community to contribute to its ongoing refinement.

• Bencsik, Alexandra Sophie; Andersen, Guro Lillemoen; Skranes, Jon Sverre; Lydersen, Stian & Hollung, Sandra Julsen (2025). Cerebral Magnetic Resonance Imaging of Children With Cerebral Palsy Showed Vulnerabilities Related to Gestational Age. Acta Paediatrica. ISSN 0803-5253. doi: 10.1111/apa.70365. Full text in Research Archive Show summary

  ABSTRACT Aim This study aimed to describe cerebral magnetic resonance imaging (MRI) findings in children with cerebral palsy (CP) and compare them with risk factors and clinical features. Methods Data on 1867 children with CP born in 2000–2016 were retrieved from the Norwegian Quality and Surveillance Registry for CP and linked to the Medical Birth Registry. Descriptive statistics were used. Results MRI scans were performed in 1463 children, that revealed one predominant pathogenic finding: 44.6% white matter injuries, 28.4% grey matter injuries, 13.5% normal, 7.9% maldevelopments and 5.5% miscellaneous. The proportion of grey matter injuries increased as gestational age increased ( p  < 0.01). However, white matter injuries were more common in children born at term and small for gestational age (SGA) than in those not SGA ( p  = 0.03). In term‐born children, grey matter injuries decreased with increasing 5‐min Apgar scores ( p  < 0.01). Half of the children with spastic CP had white matter injuries, while half of those with dyskinetic CP had grey matter injuries. White matter injuries were the most common, regardless of the Gross Motor Function Classification System level. Children with epilepsy mainly had grey matter injuries. Conclusion This study highlighted the vulnerability of white and grey matter in preterm and term infants with CP, respectively.

• Vinje, Svend; Terjesen, Terje Gunerius; Horn, Joachim; Hollung, Sandra Julsen & Kibsgård, Thomas Johan (2025). Surgical and health outcomes of non‐ambulatory children with cerebral palsy and severe scoliosis: A population‐based, longitudinal study. Developmental Medicine & Child Neurology. ISSN 0012-1622. doi: 10.1111/dmcn.16473. Full text in Research Archive Show summary

  Abstract Aim To evaluate medium‐term surgical outcomes, complications, mortality, and health‐related quality of life (HRQoL) in non‐ambulatory children with cerebral palsy (CP) and severe scoliosis, and to analyse outcomes and mortality rates in children who had not undergone surgery. Method Data on non‐ambulatory children with CP and severe scoliosis born from 2002 to 2008 were extracted from the Norwegian Quality and Surveillance Registry for Cerebral Palsy. Seventy‐five children (44 males, 31 females) were included. Thirty‐eight (51%; mean age at surgery 14 years 4 months; SD = 2 years 4 months; range = 8–18 years) underwent surgical correction and posterior spinal fusion, with a mean preoperative Cobb angle of 90° (range = 49°–140°), while 37 (49%) children had non‐surgical treatment. HRQoL was measured with the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Results Eighteen children (47%) had postoperative complications; 5 of 38 (13%) children underwent further surgery. Surgical treatment improved sitting posture and back pain. The mean CPCHILD score was 49.0 (range = 19–84). Among non‐surgically treated children, 15 of the 31 children considered too fragile to undergo spinal surgery (48%) died during the follow‐up; the mean CPCHILD score for the remaining children was 36.4 points (range = 9–59). Interpretation Although surgical correction of scoliosis in non‐ambulatory children with CP carried a high risk of complications and re‐operations, it resulted in improved sitting posture and reduced back pain. Children who were not eligible for surgical treatment had a high mortality rate.

• Sigholt, Maria Wiedswang; Andersen, Guro Lillemoen; Lydersen, Stian; Thomsen, Liv Cecilie Vestrheim; Vik, Torstein & Hollung, Sandra Julsen (2025). Cerebral palsy and perinatal mortality in children born in Norway to immigrant mothers. Developmental Medicine & Child Neurology. ISSN 0012-1622. 67(8), p. 1053–1062. doi: 10.1111/dmcn.16253. Full text in Research Archive Show summary

  Aim: To compare the prevalence and clinical characteristics of cerebral palsy (CP), and perinatal mortality, in children born to non-immigrant mothers with children born to immigrant mothers. Method: This was a registry-based cross-sectional study. Data on children born from 2000 to 2016 were extracted from the Medical Birth Registry of Norway and linked to the Norwegian Quality and Surveillance Registry for Cerebral Palsy. The mother's country of birth was categorized into three groups: non-immigrant (born in Norway); immigrant from high-income countries (HICs); and immigrant from low- and middle-income countries (LMICs) (born abroad giving birth in Norway). Birth prevalence of CP and prevalence of perinatal mortality per 1000 live births were calculated. Odds ratios (ORs) for CP among live-born children of non-immigrant mothers compared to mothers from HICs and LMICs were calculated using logistic regression, both unadjusted and adjusted for each risk factor for CP. Pearson χ2 tests were used to compare the proportions of clinical characteristics. Results: The prevalence of CP among non-immigrant mothers was 2.11 per 1000 live births, 1.44 among mothers from HICs, and 1.71 among mothers from LMICs. The OR for CP in mothers from HICs was 0.68 and 0.81 in mothers from LMICs. Despite mothers from LMICs having higher proportions of consanguinity and lower folate intake, and their children having lower Apgar scores, the ORs for CP were unchanged after adjusting for these. Yet, children born to mothers from LMICs had higher perinatal mortality; their children with CP had higher proportions of intellectual disability. Interpretation: The lower birth prevalence of CP among children born to mothers from LMICs was unexpected. Yet, children born to mothers from LMICs had higher perinatal mortality, which could impact the number of live-born children with CP.

• Stadskleiv, Kristine; Lorentzen, Lena Elin & Hollung, Sandra Julsen (2025). Cognitive assessment practices of children with cerebral palsy: a national cohort study. Developmental Neurorehabilitation. ISSN 1751-8423. 28(4-5), p. 125–131. doi: 10.1080/17518423.2025.2526357. Full text in Research Archive Show summary

  Aim Children with cerebral palsy (CP) are at risk of cognitive impairments. Cognitive assessments identify support needs. However, not all children with CP are assessed. This study investigates if there are systematic differences between children with CP cognitively assessed and not assessed. Method Children registered in the Norwegian Quality and Surveillance Registry for Cerebral Palsy born 2002–2014 were included. Results Of the 1532 children included, 972 (63.4%) had a cognitive assessment. Children with Motor Ability Classification System levels IVV and/or Viking Speech Scale level IV were less likely to be assessed. Discussion It is disconcerting that children with CP and the most severe impairments are less likely to be offered assessments, given their needs for individually tailored interventions.

• Larsen, Selma Mujezinovic; Ramstad, Kjersti; Hollung, Sandra Julsen; Andersen, Guro Lillemoen & Diseth, Trond Haaken (2025). Higher Self-Than Parent-Reported Health-Related Quality of Life in Adolescents With Cerebral Palsy; a Register Study. Acta Paediatrica. ISSN 0803-5253. 114(8), p. 1918–1925. doi: 10.1111/apa.70055. Full text in Research Archive
• Lorentzen, Lena Elin; Hollung, Sandra Julsen & Stadskleiv, Kristine (2025). Considerations when assessing cognition in children with cerebral palsy. The Clinical Neuropsychologist. ISSN 1385-4046. 40(5), p. 1317–1338. doi: 10.1080/13854046.2025.2547010. Full text in Research Archive Show summary

  Objective: To describe cognitive assessment results in relation to clinical characteristics in children with cerebral palsy (CP) and to compare methods for calculating composite scores, taking their motor impairments into account. Method: All children registered in the Norwegian Quality and Surveillance Registry for Cerebral Palsy born 2002–2014 were included. The contribution of clinical characteristics per assessment results were investigated using one-way ANOVA (eta-squared (η2) effect size) and multiple linear regression analyzes. Composite scores were compared with paired samples t-test (Cohen’s d effect size). Results: Of the 1532 children with CP registered, 972 (63.4%) had a cognitive assessment. An Intelligence Quotient (IQ) score was available for 451 (46.4%) of the assessed children (range 40 − 129, mean 82.3). Twenty-two percent had an intellectual disability. Mean IQ was lowest in children with spastic quadriplegic CP, epilepsy, and/or severe hearing impairment (effect sizes were small, η2 = 0.05, 0.05 and 0.01, respectively). The Verbal Comprehension Index score was highest and Visual Spatial Index lowest, with moderate effect size, d = 0.7. Fine motor skills and speech ability contributed most towards explaining variability in Wechsler Full Scale IQ (FSIQ). General Ability Index, Fluid Reasoning Index and Nonmotor Full Scale Score were higher than FSIQ, with small to moderate effect sizes of d = 0.61, 0.46 and 0.62, respectively. Conclusions: Variability in cognitive functioning underscores the importance of individual assessments. Better scores were obtained on composite measures using subtests that did not place high demands on fine motor skills, indicating a need for tailoring assessment practice to children with CP.

• Johansen, Stine; Andersen, Guro Lillemoen; Lydersen, Stian; Kalleson, Runa & Hollung, Sandra Julsen (2024). Use of primary health care services among children and adolescents with cerebral palsy. Developmental Medicine & Child Neurology. ISSN 0012-1622. 66(9), p. 1234–1243. doi: 10.1111/dmcn.15879. Full text in Research Archive Show summary

  Aim To investigate the use of general practitioners and urgent care centres (UCC) among children and adolescents with cerebral palsy (CP) compared to a control group, and per gross motor function level. Method Data on children with CP born 1996 to 2014 were collected from the Norwegian Quality and Surveillance Registry for Cerebral Palsy. A control group was extracted from Statistics Norway. The date and diagnosis codes for general practitioner and UCC contacts from 2006 to 2015 were collected from the Norwegian Control and Payment of Health Reimbursement Database. Incidence rate ratios (IRR) for the number of contacts per person-year with 95% confidence intervals (CI) were calculated using Poisson regression. Risk differences with 95% CI were used to compare cumulative diagnosis incidences between children with CP and the control group. Results The study included 2510 children (1457 males; 58.1%) with CP and 12 041 (7003 males; 58.2%) without CP (mean age in both groups 7 years 2 months, SD 4 years 8 months, range 0–19 years), with 336 250 contacts. Children with CP had more general practitioner (IRR 1.47; 95% CI 1.29–1.67) and UCC (IRR 1.30; 95% CI 1.13–1.50) contacts than children without CP, for all ages. IRRs remained unchanged when comparing children with CP in Gross Motor Function Classification System (GMFCS) levels I and II to children without CP. Among children with CP, contact increased as GMFCS levels increased, and they were in contact most often for respiratory and general and unspecified diagnoses. The risk for epilepsy was highest for those in contact with general practitioners. Interpretation Children with CP, including those with less severe motor impairments, contacted general practitioners and UCCs more than children without CP. However, contact increased as gross motor impairment increased. They had contact for many diagnoses, mostly respiratory.

• Papavasiliou, Antigone; Hollung, Sandra Julsen; Virella, Daniel; Delobel-Ayoub, Malika; Hollody, Katalin & Neubauer, David [Show all 8 contributors for this article] (2024). Perspectives of cerebral palsy experts on access to health care in Europe. European journal of paediatric neurology. ISSN 1090-3798. 52, p. 20–28. doi: 10.1016/j.ejpn.2024.06.002. Full text in Research Archive Show summary

  Aim: To explore the perspectives of cerebral palsy (CP) experts on access to healthcare and an analysis of socioeconomic and environmental determinants impacting young individuals with CP in Europe. Method: Cross-sectional survey designed by a convenience multi-disciplinary panel of invited experts and completed by clinicians, researchers and opinions leaders in the field of CP. Results: Fifty-eight experts (response rate 85%) from 39 regions in 26 European countries completed the survey. All countries provide care and financing through public systems. Long waiting lists were reported (mean 3 mo., range 1-12 mo.), depending on type of specialist care and place of residence. Although diagnostic and therapeutic services were available, access within countries/regions were unevenly distributed, with children receiving better care than adults. Most experts reported a lack of transition services, although improvement is expected (62% of responses). Hip and malnutrition surveillance, as well as educational and recreational activities were variably available. Public transportation, accessible roads and pavements, and urban green spaces for persons with disabilities were more available in larger cities. Overall, only 57% of responders felt that most patients had adequate access to healthcare. Conclusion: The survey of CP experts’ perspectives from the majority of European countries indicates discrepancies in the availability and accessibility of healthcare needed by people with CP and nonuniform implementation of policies across Europe.

• Hollung, Sandra Julsen; Jahnsen, Reidun Birgitta; Klevberg, Gunvor Lilleholt; Kløve, Nina & Andersen, Guro Lillemoen (2023). The impact of longitudinal surveillance of individuals with cerebral palsy in Norway; a 20-year quality registry and follow-up program perspective. Norsk Epidemiologi. ISSN 0803-2491. 31(1-2), p. 15–23. doi: 10.5324/nje.v31i1-2.5606. Full text in Research Archive Show summary

  The Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) has systematically collected data on individuals with cerebral palsy (CP) and been a driver of knowledge dissemination for over 20 years. NorCP data have increased the competence of health professionals in both the municipal and specialist healthcare services through publication of multiple scientific articles ranging from risk factors for CP to lifelong interventions, quality improvement projects, and training services. This has led to a streamlined process in the diagnosis and follow-up of children and youths with CP in Norway to ensure that they receive"the right treatment at the right time," regardless of where they live using evidence-based interventions based on needs that are revealed in the registrations. NORSK SAMMENDRAG Norsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP) har systematisk samlet inn data om personer med cerebral parese og vært en pådriver for kunnskapsformidling i over 20 år. NorCP data har økt kompetansen til helsepersonell i både kommune- og spesialisthelsetjenesten gjennom publisering av flerevitenskapelige artikler om risikofaktorer for CP til livslange intervensjoner, kvalitetsforbedringsprosjekter samt kurs og kompetansetjenester. Dette har ført til økt kvalitet på diagnostisering og oppfølging av barn og unge med CP i Norge, som sikrer at de får «riktig behandling til rett tid», uansett hvor de bor i landet medbruk av evidensbaserte intervensjoner basert på behov som avdekkes ved registreringene.

• Friede, Pamela; Hollung, Sandra Julsen; Vik, Torstein; Andersen, Guro Lillemoen; Cameron, David Lansing & Benavent, Sigrid Aune de Rodez [Show all 10 contributors for this article] (2023). Norwegian paediatric habilitation centres judge their own competence on cerebral visual impairment as limited. Acta Paediatrica. ISSN 0803-5253. 112(7), p. 1530–1536. doi: 10.1111/apa.16778. Full text in Research Archive Show summary

  Aim: Cerebral visual impairment (CVI), a frequently occurring functional impairment in children with neurodevelopmental disorders, leads to communicative, social and academic challenges. In Norway, children with neurodevelopmental disorders are assessed at paediatric habilitation centres. Our aims were to explore how CVI is identified, how paediatric habilitation centres assess their CVI competence and the reported prevalence of CVI among children with cerebral palsy. Methods: An electronic questionnaire was sent to all 19 Norwegian paediatric habilitation centre leaders in January 2022. The results were analysed quantitatively and qualitatively. The prevalence of CVI among children with cerebral palsy was estimated using register-based data. Results: The questionnaire was answered by 17. Only three judged their habilitation centre as having sufficient competence on CVI. None of the centres used screening questionnaires systematically, and 11 reported that CVI assessment was not good enough. Awareness that a child may have CVI typically occurred during examinations for other diagnoses. The prevalence of CVI among children with cerebral palsy was only 8%, while CVI status was unknown in 33%. Conclusion: Better knowledge and assessment of CVI at Norwegian paediatric habilitation centres are needed. CVI appears to be often overlooked in children with neurodevelopmental disorders.

• Stockman, Jessica; Eggertsdottir, Guðbjörg; Gaston, Mark; Jeglinsky-Kankainen, Ira F. D.; Hollung, Sandra Julsen & Nordbye-Nielsen, Kirsten [Show all 8 contributors for this article] (2023). Ankle-foot orthoses among children with cerebral palsy: a cross-sectional population-based register study of 8,928 children living in Northern Europe. BMC Musculoskeletal Disorders. 24. doi: 10.1186/s12891-023-06554-z. Full text in Research Archive Show summary

  Background Cerebral palsy (CP) is an umbrella term where an injury to the immature brain affects muscle tone and motor control, posture, and at times, the ability to walk and stand. Orthoses can be used to improve or maintain function. Ankle-foot orthoses (AFOs) are the most frequently used orthoses in children with CP. However, how commonly AFOs are used by children and adolescents with CP is still unknown. The aims of this study were to investigate and describe the use of AFOs in children with CP in Sweden, Norway, Finland, Iceland, Scotland, and Denmark, and compare AFO use between countries and by gross motor function classification system (GMFCS) level, CP subtype, sex, and age. Method Aggregated data on 8,928 participants in the national follow-up programs for CP for the respective countries were used. Finland does not have a national follow-up program for individuals with CP and therefore a study cohort was used instead. Use of AFOs were presented as percentages. Logistic regression models were used to compare the use of AFOs among countries adjusted for age, CP subtype, GMFCS level, and sex. Results The proportion of AFO use was highest in Scotland (57%; CI 54–59%) and lowest in Denmark (35%; CI 33–38%). After adjusting for GMFCS level, children in Denmark, Finland, and Iceland had statistically significantly lower odds of using AFOs whereas children in Norway and Scotland reported statistically significantly higher usage than Sweden. Conclusion In this study, the use of AFOs in children with CP in countries with relatively similar healthcare systems, differed between countries, age, GMFCS level, and CP subtype. This indicates a lack of consensus as to which individuals benefit from using AFOs. Our findings present an important baseline for the future research and development of practical guidelines in terms of who stands to benefit from using AFOs.

• Hollung, Sandra Julsen & Given, Joanne (2023). Insights from the epidemiology of cerebral palsy: Navigating the advantages and limitations of registry versus administrative health data. Paediatric and Perinatal Epidemiology. ISSN 0269-5022. doi: 10.1111/ppe.13036. Full text in Research Archive
• Evensen, Thomas L.; Vik, Torstein; Andersen, Guro Lillemoen; Bjellmo, Solveig & Hollung, Sandra Julsen (2023). Prevalence, birth, and clinical characteristics of dyskinetic cerebral palsy compared with spastic cerebral palsy subtypes: A Norwegian register‐based study. Developmental Medicine & Child Neurology. ISSN 0012-1622. 65(11), p. 1464–1474. doi: 10.1111/dmcn.15598. Full text in Research Archive Show summary

  Aim: To study the prevalence, birth, and clinical characteristics of children with dyskinetic cerebral palsy (CP) in Norway compared with spastic quadriplegic CP and other spastic CP subtypes. Method: Data on children born from 1996 to 2015 were collected from the Norwegian Quality and Surveillance Registry for Cerebral Palsy and the Medical Birth Registry of Norway. Results: One hundred and seventy (6.8%) children had dyskinetic CP. The birth prevalence decreased during 1996 to 2015 from 0.21 to 0.07 per 1000 livebirths (p < 0.001). Dyskinetic CP was more often associated with term/post-term birth, and motor and associated impairments were more severe compared with spastic bilateral and unilateral CP, but less severe than spastic quadriplegic CP. On neuroimaging, grey matter injuries were most prevalent in dyskinetic CP (mainly basal ganglia/thalamus) and spastic quadriplegic CP (mainly cortico-subcortical), white matter injuries in spastic bilateral, and white and grey matter injuries were equally common in spastic unilateral CP. Normal neuroimaging and brain maldevelopment were present in 25% of children with dyskinetic CP. Interpretation: The decrease in birth prevalence of dyskinetic CP was probably due to improved antenatal and perinatal care. Potential sentinel events at term were more common in dyskinetic CP than other spastic CP subtypes. However, probable antenatal aetiologies were most prevalent. Motor and associated impairments were less severe in children with dyskinetic CP compared with spastic quadriplegic CP.

• Carlsen, Henriette; Vik, Torstein; Andersen, Guro Lillemoen; Stangenes, Kristine Marie; Bjellmo, Solveig & Westvik-Johari, Kjersti [Show all 7 contributors for this article] (2023). Cerebral palsy in children born after assisted reproductive technology in Norway: Risk, prevalence, and clinical characteristics. Acta Obstetricia et Gynecologica Scandinavica. ISSN 0001-6349. 102(11), p. 1450–1458. doi: 10.1111/aogs.14663. Full text in Research Archive Show summary

  The aim was to investigate the risk, prevalence, and clinical characteristics of cerebral palsy among children born after assisted reproductive technology (ART) in Norway. Material and methods All liveborn children from 2002 to 2015 were included. Information was collected from the Medical Birth Registry of Norway, linked to the Norwegian Quality and Surveillance Registry for Cerebral Palsy as of December 31, 2022. Logistic regression analyses were used to calculate the prevalence of cerebral palsy per 1000 live births after ART and natural conception with birth year as covariate, crude odds ratios (OR) for cerebral palsy among children born after ART using children born after natural conception as reference, and OR adjusted for potential confounders, with 95% confidence intervals (CI). Potential mediators of the association were studied in stratified analyses. Descriptive statistics were used to compare proportions in clinical characteristics among children with cerebral palsy born after ART and natural conception. Results Among 833 645 livebirths, 23 645 children were born after ART and of the latter 97 were diagnosed with cerebral palsy. The overall prevalence of cerebral palsy after ART was 4.10 per 1000 live births (95% CI 3.36–5.00), decreasing from 7.79 per 1000 in 2002 to 3.55 in 2015. Compared with children born after natural conception, the OR for cerebral palsy was 2.01 (95% CI 1.63–2.47) adjusted for mother's age at birth, parity, and pre-pregnancy health. When restricted to singletons born at term, the adjusted OR for cerebral palsy was 1.13 (95% CI 0.76–1.69). The distribution of cerebral palsy subtypes and the severity of gross and fine motor function and associated impairments did not differ significantly between children with cerebral palsy born after ART and natural conception. Conclusions Children born after ART had a risk of cerebral palsy that was twice that of children born after natural conception. The increased risk of cerebral palsy after ART is likely attributed to multiple pregnancies and preterm births. The prevalence of cerebral palsy after ART decreased significantly during the study period, despite an increased use of ART in the population. The distribution of clinical characteristics did not differ between children with cerebral palsy born after ART and those born after a natural conception, suggesting that the risk factors for, and causes of cerebral palsy were similar.

• Mynarek, Maren; Vik, Torstein; Andersen, Guro L.; Brigtsen, Anne K.; Hollung, Sandra Julsen & Larose, Tricia L. [Show all 10 contributors for this article] (2023). Mortality and neurodevelopmental outcome after invasive group B streptococcal infection in infants. Developmental Medicine & Child Neurology. ISSN 0012-1622. 66(1), p. 125–133. doi: 10.1111/dmcn.15643. Full text in Research Archive Show summary

  Aim: To assess case fatality rate (CFR), infant mortality, and long-term neurodevelopmental disorders (NDDs) after invasive group B streptococcal (GBS; Streptococcus agalactiae) infection in infants. Method: Children born in Norway between 1996 and 2019 were included. Data on pregnancies/deliveries, GBS infection, NDDs, and causes of death were retrieved from five national registries. The exposure was culture-confirmed invasive GBS infection during infancy. Outcomes were mortality and NDDs, the latter at a mean age of 12 years 10 months. Results: Among 1 415 625 live-born children, 866 (87%) of 1007 infants diagnosed with GBS infection (prevalence 0.71 per 1000) were included. The CFR was 5.0% (n = 43). GBS infection was associated with higher infant mortality (relative risk 19.41; 95% confidence interval [CI] 14.79–25.36) than the general population. Among survivors, 169 (20.7%) children were diagnosed with any NDD (relative risk 3.49; 95% CI 3.05–3.98). In particular, GBS meningitis was associated with high risks of attention-deficit/hyperactivity disorder, cerebral palsy, epilepsy, hearing impairment, and pervasive and specific developmental disorder. Interpretation: The burden of invasive GBS infection during infancy is considerable and continues to affect children beyond infancy. These findings emphasize the need for new preventive strategies for disease reduction, and the need for survivors to be directly included into early detection pathways to access early intervention if required.

• Garne, Ester; Goldsmith, Shona; Barisic, Ingeborg; Braz, Paula; Dakovic, Ivana & Gibson, Catherine [Show all 15 contributors for this article] (2023). Severe Congenital Heart Defects and Cerebral Palsy. Journal of Pediatrics. ISSN 0022-3476. 262, p. 1–8. doi: 10.1016/j.jpeds.2023.113617. Full text in Research Archive Show summary

  Objective: To report the prevalence of cerebral palsy (CP) in children with severe congenital heart defects (CHD) and the outcome/severity of the CP. Methods: Population-based, data-linkage study between cerebral palsy and congenital anomaly registers in Europe and Australia. The EUROCAT definition of severe CHD (sCHD) was used. Linked data from four regions in Europe and two in Australia were included. All children born in the regions from 1991 through 2009 diagnosed with CP and/or sCHD were included. Linkage was completed locally. De-identified linked data were pooled for analysis. Results: The study sample included 4989 children with CP and 3684 children with sCHD. The total number of livebirths in the population was 1,734,612. The prevalence of CP was 2.9 per 1000 births (95% CI 2.8-3.0) and the prevalence of sCHD was 2.1 per 1000 births (95% CI 2.1-2.2). Of the children with sCHD, 1.5% (n=57) had a diagnosis of CP of which 35 (61%) children had pre/perinatally acquired CP (resulting from a brain injury up to 28 days of life) and 22 (39%) children had a post-neonatal cause (a brain injury between 28 days and 2 years). Children with CP and sCHD more often had unilateral spastic cerebral palsy and more intellectual impairments than children with CP without congenital anomalies. Conclusions: In high-income countries, the proportion of children with CP is much higher in children with sCHD than in the background population. The severity of children with CP and sCHD is milder compared with children with CP without congenital anomalies.

• Knudsen, Maja Jasmin; Stadskleiv, Kristine; O'Regan, Elisabeth; Alriksson-Schmidt, Ann I.; Andersen, Guro Lillemoen & Hollung, Sandra Julsen [Show all 8 contributors for this article] (2022). The implementation of systematic monitoring of cognition in children with cerebral palsy in Sweden and Norway. Disability and Rehabilitation. ISSN 0963-8288. doi: 10.1080/09638288.2022.2094477. Full text in Research Archive Show summary

  Children with cerebral palsy (CP) are at risk of cognitive impairments and need to be cognitively assessed to allow for individualized interventions, if applicable. Therefore, a systematic protocol for the follow-up of cognition in children with CP, CPCog, with assessments offered at five/six and 12/13 years of age, was developed. This report presents and discusses assessment practices in Sweden and Norway following the introduction of CPCog and a quality improvement project in Norway aimed at increasing the number of children offered cognitive assessments. Materials and methods A questionnaire investigating assessment practices was sent to pediatric habilitation centers in Sweden and Norway. In Norway, the habilitation centers also participated in a quality improvement project aimed at increasing adherence to the CPCog protocol. Results Of the respondents, 64–70% report that they assess cognition in children with all degrees of motor impairment, and 70–80% assess at the ages recommended in CPCog. Following the quality improvement project in Norway, the percentage of children assessed increased from 34 to 62%. Conclusions The findings illustrate that the provision of information is not sufficient to change practice. Implementation of new re/habilitation procedures is aided by targeting health care practices individually.

• McIntyre, Sarah; Goldsmith, Shona; Webb, Annabel; Ehlinger, Virginie; Hollung, Sandra Julsen & McConnell, Karen [Show all 11 contributors for this article] (2022). Global prevalence of cerebral palsy: A systematic analysis. Developmental Medicine & Child Neurology. ISSN 0012-1622. 64(12), p. 1494–1506. doi: 10.1111/dmcn.15346. Full text in Research Archive Show summary

  Aim To determine trends and current estimates in regional and global prevalence of cerebral palsy (CP). Method A systematic analysis of data from participating CP registers/surveillance systems and population-based prevalence studies (from birth year 1995) was performed. Quality and risk of bias were assessed for both data sources. Analyses were conducted for pre-/perinatal, postnatal, neonatal, and overall CP. For each region, trends were statistically classified as increasing, decreasing, heterogeneous, or no change, and most recent prevalence estimates with 95% confidence intervals (CI) were calculated. Meta-analyses were conducted to determine current birth prevalence estimates (from birth year 2010). Results Forty-one regions from 27 countries across five continents were represented. Pre-/perinatal birth prevalence declined significantly across Europe and Australia (11 out of 14 regions), with no change in postneonatal CP. From the limited but increasing data available from regions in low- and middle-income countries (LMICs), birth prevalence for pre-/perinatal CP was as high as 3.4 per 1000 (95% CI 3.0–3.9) live births. Following meta-analyses, birth prevalence for pre-/perinatal CP in regions from high-income countries (HICs) was 1.5 per 1000 (95% CI 1.4–1.6) live births, and 1.6 per 1000 (95% CI 1.5–1.7) live births when postneonatal CP was included. Interpretation The birth prevalence estimate of CP in HICs declined to 1.6 per 1000 live births. Data available from LMICs indicated markedly higher birth prevalence.

• Hägglund, Gunnar; Hollung, Sandra Julsen; Ahonen, Matti; Andersen, Guro Lillemoen; Eggertsdottir, Guðbjörg & Gaston, Mark [Show all 11 contributors for this article] (2021). Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: a CP-North registry study. BMC Neurology. 21. doi: 10.1186/s12883-021-02289-3. Full text in Research Archive Show summary

  Background Spasticity is present in more than 80% of the population with cerebral palsy (CP). The aim of this study was to describe and compare the use of three spasticity reducing methods; Botulinum toxin-A therapy (BTX-A), Selective dorsal rhizotomy (SDR) and Intrathecal baclofen therapy (ITB) among children and adolescents with CP in six northern European countries. Methods This registry-based study included population-based data in children and adolescents with CP born 2002 to 2017 and recorded in the follow-up programs for CP in Sweden, Norway, Denmark, Iceland and Scotland, and a defined cohort in Finland. Results A total of 8,817 individuals were included. The proportion of individuals treated with SDR and ITB was significantly different between the countries. SDR treatment ranged from 0% ( Finland and Iceland) to 3.4% (Scotland) and ITB treatment from 2.2% (Sweden) to 3.7% (Denmark and Scotland). BTX-A treatment in the lower extremities reported 2017–2018 ranged from 8.6% in Denmark to 20% in Norway (p < 0.01). Mean age for undergoing SDR ranged from 4.5 years in Norway to 7.3 years in Denmark (p < 0.01). Mean age at ITB surgery ranged from 6.3 years in Norway to 10.1 years in Finland (p < 0.01). Mean age for BTX-A treatment ranged from 7.1 years in Denmark to 10.3 years in Iceland (p < 0.01). Treatment with SDR was most common in Gross Motor Function Classification System (GMFCS) level III, ITB in level V, and BTX-A in level I. The most common muscle treated with BTX-A was the calf muscle, with the highest proportion in GMFCS level I. BTX-A treatment of hamstring and hip muscles was most common in GMFCS levels IV-V in all countries. Conclusion There were statistically significant differences between countries regarding the proportion of children and adolescents with CP treated with the three spasticity reducing methods, mean age for treatment and treatment related to GMFCS level. This is likely due to differences in the availability of these treatment methods and/or differences in preferences of treatment methods among professionals and possibly patients across countries.

• Stadskleiv, Kristine; Walsem, Marleen R. van; Andersen, Guro Lillemoen; Bergqvist, Lena; Bøttcher, Louise & Christensen, Klaus [Show all 16 contributors for this article] (2021). Systematic Monitoring of Cognition for Adults With Cerebral Palsy—The Rationale Behind the Development of the CPCog-Adult Follow-Up Protocol. Frontiers in Neurology. 12, p. 1–10. doi: 10.3389/fneur.2021.710440. Full text in Research Archive Show summary

  Cerebral palsy (CP) comprises a heterogeneous group of conditions recognized by disturbances of movement and posture and is caused by a non-progressive injury to the developing brain. Birth prevalence of CP is about 2–2.5 per 1,000 live births. Although the motor impairment is the hallmark of the diagnosis, individuals with CP often have other impairments, including cognitive ones. Cognitive impairments may affect communication, education, vocational opportunities, participation, and mental health. For many years, CP has been considered a “childhood disability,” but the challenges continue through the life course, and health issues may worsen and new challenges may arise with age. This is particularly true for cognitive impairments, which may become more pronounced as the demands of life increase. For individuals with CP, there is no one-to-one correlation between cognition and functioning in other areas, and therefore, cognition must be individually assessed to determine what targeted interventions might be beneficial. To facilitate this for children with CP, a systematic follow-up protocol of cognition, the CPCog, has been implemented in Norway and Sweden. However, no such protocol currently exists for adults with CP. Such discontinuity in healthcare services that results from lack of follow-up of cognitive functioning and subsequent needs for adjustments and interventions makes transition from pediatric to adult healthcare services challenging. As a result, a protocol for the surveillance of cognition in adults with CP, the CPCog-Adult, has been developed. It includes assessment of verbal skills, non-verbal reasoning, visual–spatial perception, and executive functioning. It is recommended to perform these assessments at least once in young adulthood and once in the mid-fifties. This report describes the process of developing the CPCog-Adult, which has a three-fold purpose: (1) to provide equal access to healthcare services to enable the detection of cognitive impairments; (2) to provide interventions that increase educational and vocational participation, enhance quality of life, and prevent secondary impairments; and (3) to collect systematic data for research purposes. The consent-based registration of data in the well-established Swedish and Norwegian national CP registries will secure longitudinal data from childhood into adulthood.

• Hollung, Sandra Julsen; Hägglund, Gunnar; Gaston, Mark; Seid, Abdu Kedir; Lydersen, Stian & Alriksson-Schmidt, Ann I. [Show all 7 contributors for this article] (2021). Point prevalence and motor function of children and adolescents with cerebral palsy in Scandinavia and Scotland: a CP‐North study. Developmental Medicine & Child Neurology. ISSN 0012-1622. 63(6), p. 721–728. doi: 10.1111/dmcn.14764. Full text in Research Archive Show summary

  Abstract Aim To describe the point prevalence of cerebral palsy (CP) and distribution of gross and fine motor function in individuals registered in a CP‐North surveillance programme. Method Aggregate data of individuals with CP aged 6 to 19 years, sex, CP subtype, and gross and fine motor function levels were collected from each programme. Overall and age‐specific point prevalence of CP was calculated for each programme using 95% confidence intervals. Logistic regression was used to estimate prevalence and CP subtypes with age as the covariate variable. Pearson χ2 tests were used to compare the distributions of CP subtypes, Gross Motor Function Classification System (GMFCS) levels, and Manual Ability Classification System (MACS) levels by age and between programmes. Results Among 3 759 138 individuals residing in Scandinavia and Scotland, 8278 had a diagnosis of CP (57–59% were males). The overall point prevalence of CP ranged from 2.13 to 2.32 per 1000 residents. Age‐specific prevalence in each programme varied with the exception of Denmark. While the proportions of bilateral spastic CP were similar between programmes, there were variations in all other CP subtypes and in GMFCS and MACS levels. Interpretation While the results of this study may reflect real differences in CP populations between countries, they may not be clinically relevant. The variations may be attributable to differences in the year when each programme was first established, different data collection methods, and country‐specific governmental policies.

• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2021). The Challenge of Identifying Causal Pathways Leading to Cerebral Palsy. Pediatrics. ISSN 0031-4005. 147(3). doi: 10.1542/peds.2020-033720. Full text in Research Archive
• Tharaldsen, Guro; Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2021). High occurrence of perinatal risk factors and more severe impairments in children with postneonatal cerebral palsy in Norway. Acta Paediatrica. ISSN 0803-5253. 111(4), p. 812–819. doi: 10.1111/apa.16240. Full text in Research Archive Show summary

  Aim To describe causal events, perinatal risk factors and clinical characteristics in children with postneonatal cerebral palsy (PNCP). Methods Population-based registry study of Norwegian children born 1999–2013. Prevalence, causal events and clinical characteristics of PNCP were described. The occurrence of perinatal risk factors for CP was compared with the general population. Results Among 1710 children with CP, 67 had PNCP (3.9%; 0.75 per 10,000 livebirths [95%CI: 0.59–0.96]). The prevalence of PNCP decreased during the study period. Leading causal events were cerebrovascular events (32.8%), head injuries/other accidents (22.4%), infections (19.4%) and hypoxic events (14.9%). Spastic hemiplegic (53.7%) or spastic quadriplegic/dyskinetic CP (31.3%) was more common in children with PNCP than non-PNCP (42.3% and 20.1%, respectively; p < 0.001). Children with PNCP had more severe motor and associated impairments. Perinatal risk factors for CP were more common in children with PNCP than in the general population. Conclusion The prevalence of PNCP among Norwegian children was low and decreasing. The main causes were cerebrovascular events and head injuries/other accidents. Although spastic hemiplegic CP was the dominating subtype, children with PNCP had more severe motor and associated impairments than children with non-PNCP, as well as a higher occurrence of perinatal risk factors than in the general population.

• Raftemo, Anne Elisabeth Ross; Mahendran, Arani; Hollung, Sandra Julsen; Jahnsen, Reidun; Lydersen, Stian & Vik, Torstein [Show all 7 contributors for this article] (2019). Bruk av botulinumtoksin A til barn med cerebral parese. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. 139(8), p. 713–717. doi: 10.4045/tidsskr.18.0554. Full text in Research Archive Show summary

  BAKGRUNN Intramuskulære injeksjoner med botulinumtoksin A har i over 20 år vært en etablert behandling av spastisitet hos barn med cerebral parese. Vi undersøkte hvor mange barn med cerebral parese i Norge som får slik behandling, og hvilke retningslinjer som gjelder for behandlingen. MATERIALE OG METODE Data fra femårsregistreringen til Cerebral pareseregisteret i Norge ble benyttet til å undersøke hvor mange barn med cerebral parese født i perioden 1999–2010 som var blitt behandlet med botulinumtoksin A, og om andelen behandlede barn varierte mellom habiliteringssentrene. I en nettbasert spørreundersøkelse kartla vi hvilke retningslinjer for behandlingen alle 21 habiliteringssentrene fulgte. RESULTATER I alt 1 414 barn (gjennomsnittsalder 6,3 år) ble inkludert, hvorav 775 (55 %) var behandlet med botulinumtoksin A. Mellom habiliteringssentrene var det stor variasjon i andelen barn som fikk behandling (38–80 %; p < 0,001). Maksimum dose botulinumtoksin A per behandling per pasient var 200–600 enheter Botox. Fem sentre oppga at de har skriftlige retningslinjer for behandlingsindikasjon. FORTOLKNING Andelen barn med cerebral parese som behandles med botulinumtoksin A varierer betydelig mellom habiliteringssentrene i Norge.

• Hollung, Sandra Julsen; Bakken, Inger Johanne Landsjøåsen; Vik, Torstein; Lydersen, Stian; Wiik, Robert & Aaberg, Kari Modalsli [Show all 7 contributors for this article] (2019). Comorbidities in cerebral palsy: a patient registry study. Developmental Medicine & Child Neurology. ISSN 0012-1622. 62(1), p. 97–103. doi: 10.1111/dmcn.14307. Full text in Research Archive Show summary

  Aim To describe the total burden of disease in individuals with cerebral palsy (CP) in Norway. Method A comprehensive set of disorder categories were extracted from the Norwegian Patient Registry using International Statistical Classification of Diseases, 10th Revision diagnosis codes for individuals born between 1996 and 2010 who received specialist healthcare between 2008 and 2017 (0–21y). Individuals with CP were identified through a validation study in cooperation with the Cerebral Palsy Registry of Norway. Risk differences (proportions of individuals recorded with each disorder) were used to compare individuals with CP with the general population without CP. Results The study included 966 760 individuals. Among these, 2302 (0.24%) had CP (1330 males, 972 females). Of the individuals with CP, 95.0% were recorded with one or more comorbidity, and the risks of medical, neurological, and mental/behavioural disorders were higher compared with the risks in the general population. The most common neurological and mental/behavioural disorders were cocausal, i.e. attributed to the same injury to the developing brain that caused CP, while medical disorders were most often complications of CP or coincidentally co‐occurring with CP. Interpretation Individuals with CP have a considerably higher burden of medical, neurological, and mental/behavioural disorders compared with the general population, including disorders that are not directly caused by, or complications to, the brain injury. What this paper adds Nearly all individuals with cerebral palsy (CP) had one or more comorbidity. Fifty‐two per cent had at least one comorbidity attributed to the same cause as CP, complications of CP, and coincidentally co‐occurring with CP. Risks of medical, neurological, and mental/behavioural disorders were considerably higher than in the general population.

• Alriksson-Schmidt, Ann I.; Jeglinsky-Kankainen, Ira F. D.; Jahnsen, Reidun; Hollung, Sandra Julsen; Andersen, Guro Lillemoen & Hägglund, Gunnar (2019). Flaunting our assets. Making the most of the Nordic registry goldmine: Cerebral palsy as an example. Scandinavian Journal of Public Health. ISSN 1403-4948. doi: 10.1177/1403494819829338. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein; Lydersen, Stian; Bakken, Inger Johanne & Andersen, Guro Lillemoen (2018). Decreasing prevalence and severity of cerebral palsy in Norway among children born 1999 to 2010 concomitant with improvements in perinatal health. European journal of paediatric neurology. ISSN 1090-3798. 22(5), p. 814–821. doi: 10.1016/j.ejpn.2018.05.001. Full text in Research Archive Show summary

  Background The aim of our study was to explore if the prevalence and clinical characteristics of cerebral palsy (CP), concomitant with perinatal health indicators in the general population, remained unchanged for children born in Norway between 1999 and 2010. Methods This national multi-register cohort study included 711 174 children recorded in the Medical Birth Registry of Norway. Among these, 707 916 were born alive, and 1664 had a validated diagnosis of CP recorded in the Cerebral Palsy Registry of Norway and/or the Norwegian Patient Registry. Prevalence per 1000 live births as a function of birth year was analyzed using logistic regression with fractional polynomials to allow for non-linear trends. Chi-square statistics were used to estimate trends in proportions of clinical characteristics. Results The prevalence of CP in Norway decreased from 2.62 per 1000 live births in 1999 to 1.89 in 2010. The reduction was most evident among children with bilateral CP, in particular those with diplegia. During the study period, the proportions of children with severe motor impairments, epilepsy, intellectual impairment and reduced speech also decreased. At the same time, perinatal mortality has decreased in Norway, along with the proportion of women with preeclampsia, children born preterm or as a multiple. Conclusion We observed a significant decrease in the prevalence and severity of CP subtypes and associated impairments among children with CP in Norway. This coincided with improvements in perinatal health indicators in the general population. These improvements are most likely explained by advancements in obstetric and neonatal care.

• Hollung, Sandra Julsen; Vik, Torstein; Wiik, Robert; Bakken, Inger Johanne & Andersen, Guro Lillemoen (2017). Completeness and correctness of cerebral palsy diagnoses in two health registers: implications for estimating prevalence. Developmental Medicine & Child Neurology. ISSN 0012-1622. 59(4), p. 402–406. doi: 10.1111/dmcn.13341. Full text in Research Archive Show summary

  Aim To assess completeness and correctness of cerebral palsy (CP) diagnoses in the Cerebral Palsy Register of Norway (CPRN) and the Norwegian Patient Register (NPR), and to estimate CP prevalence. Method Among 747 883 Norwegian residents born from 1996 to 2007, 2231 had a diagnosis of CP in the NPR while 1441 were registered in the CPRN. Children registered in the CPRN were considered to have a valid CP diagnosis. For those with a diagnosis of CP only in the NPR, two paediatricians reviewed the hospital records. The prevalence rate of CP with 95% confidence intervals (CI) was calculated on the basis of the combined data sets. Results One thousand three hundred and ninety-eight children were registered with a diagnosis of CP in both registers, 43 children were only registered in the CPRN, and 824 only in the NPR. The review of hospital records revealed that 464 (59.5%) had CP. Thus, the NPR was 98% complete, and for 86% the diagnosis was correct. The completeness of the CPRN was 76%, while the diagnosis was considered correct for all children (100%). The resulting prevalence of CP was 2.5 (95% CI 2.4–2.7) per 1000. Interpretation To gain accurate estimates of prevalence rates of CP, it is essential to combine data sources and to validate register data.

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• Hollung, Sandra Julsen (2026). Public involvement in cerebral palsy registers: Putting partnership into practice. Developmental Medicine & Child Neurology. ISSN 0012-1622. doi: 10.1111/dmcn.70498. Full text in Research Archive
• Reynolds, Robert J.; Day, Steven; Goldsmith, Shona; Rackauskaite, Gija; Hollung, Sandra Julsen & Himmelmann, Kate [Show all 10 contributors for this article] (2026). Identifying High-Impact Opportunities for the Prevention of Cerebral Palsy Using A Multi-Metric Network Framework. Developmental Medicine & Child Neurology. ISSN 0012-1622. 68(S4). doi: https:/onlinelibrary.wiley.com/doi/10.1111/dmcn.70486. Full text in Research Archive Show summary

  Background & Objectives: The International Cerebral Palsy DAG Consortium recently developed a comprehensive directed acyclic graph (DAG) mapping causal pathways to cerebral palsy (CP). Structural analysis of the CP-DAG can help rank risk factors by their relative contribution to CP. This information is critical for researchers and clinicians to prioritize prevention efforts. The objective is therefore to prioritize modifiable causal factors in the CP-DAG by ranking their capacity to disrupt causal pathways using a multi-metric network analysis framework. Study participants & setting: This study uses the network structure of the CP-DAG, a causal directed acyclic graph model of the causal factors and pathways to CP. Materials & Methods: Adapting a framework originally pioneered by NASA for its Human System Risk Network, we computed three metrics for each causal factor: out-degree (immediate causal reach), inverse α-centrality (downstream systemic influence), and edge connectivity (minimum edges required to disconnect the cause from the outcome). We scaled and combined these measures using principal component analysis, deriving two component scores for each causal factor, termed systemic importance and mechanistic complexity. Results: We evaluated 7 unique causal factors. Five factors exhibited slightly below-average systemic importance (as much as 1 SD below the mean), but slightly above-average in mechanistic complexity (up to 0.5 SD above the mean). Two factors stood out: socio-economic status (SES) and social determinants of health (SDH). SES was average on mechanistic complexity but high on systemic importance (3.7 SD above the mean), while SDH was average on systemic importance and moderately low on mechanistic complexity (1 SD below average). Conclusions: Among the independent and modifiable causes of CP examined here, several are of roughly equal systemic importance and mechanistic complexity, signaling they are of comparatively low influence in the causal pathways of CP. SDH, though often touted as important overall, shows little promise beyond its direct influence on SES. To intervene on SES, specific components of this greater concept should be mapped explicitly into the network. Overall, network analysis can aid the prioritisation of opportunities to interrupt pathways to CP, both through clinical care and the prioritization of new research.

• Goldsmith, Shona; Hollung, Sandra Julsen & Reynolds, Robert (2026). The cerebral palsy directed acyclic graph: A structural causal model of aetiology'. doi: https:/dmcn.podbean.com/e/the-cerebral-palsy-directed-acyclic-graph-a-structural-causal-model-of-aetiology-shona-goldsmith-sandra-julsen-hollung-robert-reynolds-dmcn/. Full text in Research Archive Show summary

  In this podcast, Shona Goldsmith, Sandra Julsen Hollung & Robert Reynolds discuss their paper 'The cerebral palsy directed acyclic graph: A structural causal model of aetiology'.

• Hollung, Sandra Julsen (2025). Cerebral Palsy in children born after assisted reproductive technology in Norway. Full text in Research Archive
• Bencsik, Alexandra Sophie; Andersen, Guro Lillemoen; Skranes, Jon Sverre & Hollung, Sandra Julsen (2025). Cerebral magnetic resonance imaging in children with cerebral palsy. Developmental Medicine & Child Neurology. ISSN 0012-1622. doi: 10.1111/dmcn.16355. Full text in Research Archive
• Reynolds, Robert J; Day, Steven; Hollung, Sandra Julsen; Himmelmann, Kate; Rackauskaite, Gija & Dan, Bernard [Show all 9 contributors for this article] (2025). A Causal Diagram for Cerebral Palsy: A New International Collaboration. Full text in Research Archive
• Arnaud, Catherine & Hollung, Sandra Julsen (2024). Population-based cerebral palsy registries. Full text in Research Archive
• Sigholt, Maria Wiedswang; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2024). Cerebral Palsy in Children Born in Norway to Immigrant Mothers. Full text in Research Archive
• Kløve, Nina; Klevberg, Gunvor Lilleholt; Jahnsen, Reidun; Sandberg, Cathrine Utne; Bousquet, Elisabet Rodby & Stadskleiv, Kristine [Show all 10 contributors for this article] (2024). Development of evidence-based clinical guidelines for individuals with cerebral palsy through the lifespan. Full text in Research Archive
• Stadskleiv, Kristine; Lorentzen, Lena Elin & Hollung, Sandra Julsen (2024). Cognitive functioning in children with cerebral palsy: Results from a national cohort study. Developmental Medicine & Child Neurology. ISSN 0012-1622. doi: 10.1111/dmcn.15934. Full text in Research Archive
• McIntyre, Sarah; Day, Steven; Reynolds, Robert J; Badawi, Nadia; Goldsmith, Shona & Himmelmann, Kate [Show all 11 contributors for this article] (2024). Developing a causal diagram for cerebral palsy: A new worldwide multidisciplinary collaboration. Full text in Research Archive
• Hollung, Sandra Julsen (2024). The Impact of a Combined Medical Quality Registry and Surveillance Program for Cerebral Palsy: Insights and Experiences. Full text in Research Archive
• Papavasiliou, Antigone; Kinsner‐Ovaskainen, Agnieszka; Hollung, Sandra Julsen; Virella, Daniel; Hollody, Katalin & Neubauer, David [Show all 9 contributors for this article] (2023). SCPE survey: Where Europe stands in the care of cerebral palsy (CP): Needs and inequalities. Developmental Medicine & Child Neurology. ISSN 0012-1622. 65(S2). doi: 10.1111/dmcn.15594. Full text in Research Archive
• Rosenberg, Nathan; Papavasiliou, Antigone; Hollung, Sandra Julsen & Lichtenthal, Peter (2023). MINISYMP26: Making large international care strides through scholarships and education -- the impact of AACPDM scholarships and global activities of the international affairs committee. Full text in Research Archive
• Johansen, Stine; Andersen, Guro Lillemoen; Lydersen, Stian; Kalleson, Runa & Hollung, Sandra Julsen (2023). Use Of Primary Healthcare Services Among Children and Youths with Cerebral Palsy in Norway, A Registry-Based Study. Developmental Medicine & Child Neurology. ISSN 0012-1622. 65. Full text in Research Archive
• Johansen, Stine; Andersen, Guro Lillemoen; Lydersen, Stian; Kalleson, Runa & Hollung, Sandra Julsen (2023). Use Of Primary Healthcare Services Among Children and Youths with Cerebral Palsy in Norway, A Registry-Based Study. Full text in Research Archive
• Lydersen, Stian; Vik, Torstein & Hollung, Sandra Julsen (2023). The increased risk of cerebral palsy associated with assisted reproductive technology is mainly attributable to multiple pregnancies. Acta Obstetricia et Gynecologica Scandinavica. ISSN 0001-6349. doi: 10.1111/aogs.14723. Full text in Research Archive
• Raftemo, Anne Elisabeth Ross; Jahnsen, Reidun Birgitta; Brandvik, Siri; Hollung, Sandra Julsen; Zucknick, Manuela & Andersen, Guro Lillemoen (2022). Spasticity treatments and orthopedic surgeries in lower extremities in children with cerebral palsy – a longitudinal population based study. Full text in Research Archive Show summary

  Background/objectives: Intramuscular injections of Botulinum toxin A (BoNT-A) have been used to reduce spasticity in children with cerebral palsy (CP) for several decades. Despite extensive use, there is a lack of evidence-based treatment guidelines, and the optimal use of BoNT-A injections and other treatments to reduce tone and prevent contractures in children with CP is a matter of discussion. The aim of this study is to describe the use of BoNT-A treatments, Intrathecal baclofen and orthopedic surgery over a 20-year period in children with CP in Norway. Study design: National register-based longitudinal study Study participants & setting: Children with spastic, dyskinetic or unclassified CP born 2002 to 2010 with information on gross motor function recorded from 2002 to 2019 in the Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) were included. Materials/methods: We present a descriptive analysis of the distributions (N, %) of BoNT-A treatment, Intrathecal baclofen and orthopedic surgery by age, the Gross Motor Function Classification System (GMFCS) level, CP diagnosis, by muscle (BoNT-A) and type of surgery. Lexis diagrams describe the change in distributions of BoNT-A treatment, Intrathecal baclofen and orthopedic surgery for age cohorts over time. Results: Among 1010 eligible children 567 (56%) received BoNT-A in the lower extremities at least once. Among these 447 (88%) received the first treatment before the age of eight years. BoNT-A treatment was most often given to children on GMFCS level III (44, 77%). Most children received BoNT-A injections in the gastrocnemius muscle (387, 71%), the soleus muscle (251, 46%) and the hamstrings muscles (198, 37%). Among the eligible children 61 (6%) were treated with Intrathecal baclofen, and 58 (95%) of these were classified on GMFCS level IV and V. Of the 345 children (35%) who received orthopedic surgery, the highest proportion had spastic quadriplegia (93, 66%) and GMFCS level IV (53, 63%). Conclusions/significance: A high proportion of children with CP in Norway received BoNT-A, most often in the gastrocnemius muscle. Lexis diagrams will describe the changes in distributions of the treatments for age cohorts over time. This information will be used to support healthcare planning for children with CP in Norway.

• Hollung, Sandra Julsen (2022). Etiologies/risk factors and prevalence of cerebral palsy in high resource countries. Full text in Research Archive
• Schiariti, Verónica & Hollung, Sandra Julsen (2022). The rights of children with disabilities during armed conflict. Developmental Medicine & Child Neurology. ISSN 0012-1622. 64, p. 802–803. doi: 10.1111/dmcn.15240. Full text in Research Archive
• Evensen, Thomas; Andersen, Guro Lillemoen; Vik, Torstein & Hollung, Sandra Julsen (2022). Dyskinetic cerebral palsy in Norway: risk factors and clinical characteristics. Full text in Research Archive
• Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2022). NorCP – et av de største registrene i Europa av sitt slag. [Journal]. Hjernerådets nyhetsbrev. Full text in Research Archive Show summary

  Nylig deltok Guro L. Andersen som forsker, og Sandra Julsen Hollung som forfatter, da en internasjonal forskergruppe publiserte en studie om forekomst av CP i 27 land. Studien viste at forekomsten av CP er redusert med 25 prosent siden 2013 i høyinntektsland i Europa og Australia. – Fantastisk gode nyheter, sier Andersen, leder av NorCP.

• McIntyre, Sarah; Goldsmith, Shona; Himmelmann, Kate; Arnaud, Catherine; Webb, Annabel & Ehlingher, Virginie [Show all 15 contributors for this article] (2022). Global prevalence of cerebral palsy: A systematic analysis. Full text in Research Archive Show summary

  Introduction: Birth prevalence trends and most recent prevalence estimates for cerebral palsy (CP) were calculated across low-, middle- (LMI) and high- income (HI) regions, as well as current global birth prevalence. Patients and methods: A systematic analysis of data from (1) participating CP registers/surveillance systems and (2) population-based prevalence studies from the literature. Each analysis was conducted for pre/perinatal, post-neonatal and overall CP. Quality and risk of bias was assessed for both data sources. Trends in birth prevalence for each region were statistically classified as increasing, decreasing, heterogeneous or no change. Most recent prevalence estimates with 95% confidence intervals (CIs) were calculated for each region (preferential denominator live births [LBs], but children living in the area was accepted and reported separately). Meta-analyses were conducted to calculate current global birth prevalence. Results: Forty regions worldwide were included. Trends analyses were only able to be conducted in HI regions where CP registers/surveillance systems existed (n = 14 regions). Pre/perinatal CP birth prevalence declined significantly since 1995 across Australia and Europe, with no change to post-neonatal CP trends. Current global birth prevalence for HI regions is 1.5/1000 (CIs 1.4–1.6) LBs for pre/perinatal CP, 0.8/10,000 (CIs 0.6–1.0) LBs for post-neonatal CP and 1.6/1000 (CIs 1.5–1.7) LBs for overall CP. LMI regions had estimates as high as 3.4/1000 LBs and 3.7/1000 children living in the region. Conclusion: In HI regions worldwide, pre/perinatal CP is declining. The current overall birth prevalence is 1.6/1000 LBs. Limited but increasing data from LMI regions suggests birth prevalence is at least double that of HI regions.

• Alriksson-Schmidt, Ann I.; Hägglund, Gunnar; Hollung, Sandra Julsen; Ahonen, Matti; Andersen, Guro Lillemoen & Eggertsdottir, Guðbjörg [Show all 11 contributors for this article] (2021). Treatment of spasticity in children and adolescents with cerebral palsy in northern Europe: a CP-north registry study. Full text in Research Archive
• Alriksson-Schmidt, Ann I.; Hägglund, Gunnar; Hollung, Sandra Julsen; Ahonen, Matti; Andersen, Guro Lillemoen & Eggertsdottir, Guðbjörg [Show all 11 contributors for this article] (2021). Treatment of spasticity in children and adolescents with cerebral palsy in northern Europe: a CP-north registry study. Developmental Medicine & Child Neurology. ISSN 0012-1622. 63. Full text in Research Archive
• Tharaldsen, Guro; Vik, Torstein; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2021). Risk factors and clinical characteristics of children with postneonatal cerebral palsy in Norway. Full text in Research Archive
• Tharaldsen, Guro; Vik, Torstein; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2021). Risk factors and clinical characteristics of children with postneonatal cerebral palsy in Norway. Developmental Medicine & Child Neurology. ISSN 0012-1622. 63. doi: 10.1111/dmcn.14881. Full text in Research Archive Show summary

  Introduction: The aim was to describe causal factors in children with postneonatal cerebral palsy (PNCP), compare clinical characteristics in children with PNCP to children with congenital CP, and compare congenital CP risk factors in children with PNCP to the general population. Patients and Methods: The Norwegian CP Registry was linked to the Medical Birth Registry for children born 1999 to 2013 (893,864 livebirths). Among 1710 children with CP, 67 (3.9%) had PNCP and 1643 congenital CP. Chi-Square tests were used to compare clinical characteristics in children with PNCP and congenital CP, and prevalence rates to compare risk factors in children with PNCP and the general population. Results: The leading causes of PNCP were cerebrovascular diseases (33%), accidents/trauma (22%) and infections (19%). More children with PNCP had spastic hemiplegic (54%) and quadriplegic/dyskinetic (31%) CP compared to congenital CP (42%; 20%, respectively) (p<0.001). More children with PNCP were unable to walk (GMFCS IV–V) (35%), had difficulty handling objects (MACS IV–V) (29%) compared to children with congenital CP (24%, p = 0.037; 19%, p = 0.008, respectively), and had significantly more associated impairments. Compared to the general population, children with PNCP were more likely to be born preterm, with a lower birthweight for gestational age and Apgar score, as a multiple, and with a congenital malformation.

• Hollung, Sandra Julsen (2021). In Norway and world-wide, how have registers of cerebral palsy been used to improve the lives of individuals with cerebral palsy? Full text in Research Archive
• Hollung, Sandra Julsen & Andersen, Guro Lillemoen (2021). Update from the Norwegian Quality and Surveillance Registry for Cerebral Palsy. Full text in Research Archive
• Stadskleiv, Kristine; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2020). Children with cerebral palsy: Parental perceptions of the usefulness of neuropsychological assessments. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2020). Prevalence and severity of children with cerebral palsy born in Norway to immigrant mothers. Full text in Research Archive
• Hollung, Sandra Julsen; Hägglund, Gunnar; Gaston, Mark; Møller‐Madsen, Bjarne; Alriksson‐Schmidt, Ann & Andersen, Guro Lillemoen (2020). Prevalence and severity of individuals with cerebral palsy in Scandinavia and Scotland, a CP‐North study. Developmental Medicine & Child Neurology. ISSN 0012-1622. 62. doi: 10.1111/dmcn.14661. Full text in Research Archive
• Hollung, Sandra Julsen; Hägglund, Gunnar; Gaston, Mark; Møller‐Madsen, Bjarne; Alriksson‐Schmidt, Ann & Andersen, Guro Lillemoen (2020). Prevalence and severity of individuals with cerebral palsy in Scandinavia and Scotland, a CP‐North study. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2020). Prevalence and severity of children with cerebral palsy born in Norway to immigrant mothers. Developmental Medicine & Child Neurology. ISSN 0012-1622. 62. doi: 10.1111/dmcn.14661. Full text in Research Archive
• Stadskleiv, Kristine; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2020). Resultater fra kvalitetsforbedringsprosjektet i 2019 for å øke andelen barn med CP som blir utredet kognitivt. Full text in Research Archive
• Stadskleiv, Kristine; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2020). Felles løft for å avhjelpe kognitive vansker hos barn og voksne med CP. CP bladet. ISSN 0801-4752. 2, p. 35–39. Full text in Research Archive
• Hollung, Sandra Julsen (2020). Overvåkning av cerebral parese i Norge. CP bladet. ISSN 0801-4752. p. 32–33. Full text in Research Archive
• Hollung, Sandra Julsen; Bakken, Inger Johanne Landsjøåsen; Vik, Torstein; Wiik, Robert; Lydersen, Stian & Andersen, Guro Lillemoen (2019). Cerebral palsy and comorbidities, a National Registry Study in Norway. Full text in Research Archive
• Hollung, Sandra Julsen; Bakken, Inger Johanne Landsjøåsen; Vik, Torstein; Wiik, Robert; Lydersen, Stian & Andersen, Guro Lillemoen (2019). Cerebral palsy and comorbidities, a National Registry Study in Norway. Developmental Medicine & Child Neurology. ISSN 0012-1622. 61. doi: 10.1111/dmcn.14353. Full text in Research Archive
• Hollung, Sandra Julsen; Lanzoni, Monica; Delobel, Malika; Ehlinger, Virginie; Kinsner‐Ovaskainen, Agnieszka & Himmelmann, Kate [Show all 8 contributors for this article] (2019). How can data from the surveillance of cerebral palsy in Europe be useful for supporting health policies? Full text in Research Archive
• Hollung, Sandra Julsen; Lanzoni, Monica; Delobel, Malika; Ehlinger, Virginie; Kinsner‐Ovaskainen, Agnieszka & Himmelmann, Kate [Show all 8 contributors for this article] (2019). How can data from the surveillance of cerebral palsy in Europe be useful for supporting health policies? Developmental Medicine & Child Neurology. ISSN 0012-1622. 61. doi: 10.1111/dmcn.14353. Full text in Research Archive
• Hollung, Sandra Julsen; Bakken, Inger Johanne Landsjøåsen; Wiik, Robert; Vik, Torstein & Andersen, Guro Lillemoen (2019). Comorbidities among children and youths with cerebral palsy in Norway. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein; Lydersen, Stian; Bakken, Inger Johanne & Andersen, Guro Lillemoen (2018). Nedgang i forekomst og alvorlighetsgrad av cerebral parese i Norge. Full text in Research Archive
• Hollung, Sandra Julsen & Thoresen, Marianne (2018). Forekomsten og alvorlighetsgraden av cerebral parese har gått ned. [TV]. NRK Dagsrevyen. Full text in Research Archive
• Hollung, Sandra Julsen & Andersen, Guro Lillemoen (2018). Nedgang i forekomst og alvorlighetsgrad av cerebral parese i Norge. CP bladet. ISSN 0801-4752. p. 34–35. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2017). Time trends of children with cerebral palsy in Norway; a national register-based study. Developmental Medicine & Child Neurology. ISSN 0012-1622. 59. doi: 10.1111/dmcn.13455. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2017). Time trends of children with cerebral palsy in Norway; a national register-based study. Full text in Research Archive
• Vik, Torstein; Hollung, Sandra Julsen; Jahnsen, Reidun Birgitta & Andersen, Guro Lillemoen (2017). Are minimal motor disability in children with cerebral palsy associated with specific, etiological risk factors? Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2017). Comparison of young adults with cerebral palsy in Norway with and without epilepsy. Developmental Medicine & Child Neurology. ISSN 0012-1622. 59. doi: 10.1111/dmcn.58_13511. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2017). Comparison of young adults with cerebral palsy in Norway with and without epilepsy. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2016). Time trends in clinical characteristics and diagnostic measures of children with CP in Norway. Developmental Medicine & Child Neurology. ISSN 0012-1622. 58, p. 49–50. doi: 10.1111/dmcn.69_13224. Full text in Research Archive
• Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2016). Time trends in clinical characteristics and diagnostic measures of children with CP in Norway. Full text in Research Archive
• Raftemo, Anne Elisabeth Ross; Mahendran, Arani; Elkamil, Areej Ibrahim; Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2016). The need for better evidence for the use of Botulinum toxin A (BoNT-A) in the treatment of children with CP: Lessons from Norway. Full text in Research Archive
• Raftemo, Anne Elisabeth Ross; Mahendran, Arani; Elkamil, Areej Ibrahim; Hollung, Sandra Julsen; Vik, Torstein & Andersen, Guro Lillemoen (2016). The need for better evidence for the use of Botulinum toxin A (BoNT-A) in the treatment of children with CP: Lessons from Norway. Developmental Medicine & Child Neurology. ISSN 0012-1622. 58, p. 27–27. doi: 10.1111/dmcn.33_13224. Full text in Research Archive
• Raftemo, Anne Elisabeth Ross; Andersen, Guro Lillemoen; Mahendran, Arani; Elkamil, Areej Ibrahim; Hollung, Sandra Julsen & Vik, Torstein (2016). Inequalities in access to treatment with botulinum toxin A (BoNT-A) of children with CP in Norway. Full text in Research Archive
• Pennington, Lindsay; Andersen, Guro Lillemoen; Kirby, Jennifer; Hollung, Sandra Julsen & Vik, Torstein (2016). Prediction of speech intelligibility of children with cerebral palsy (CP) from characteristics at 2 years of age. Full text in Research Archive
• Hollung, Sandra Julsen; Andersen, Guro Lillemoen; Wiik, Robert; Bakken, Inger Johanne & Vik, Torstein (2016). What is the ”true” prevalence of cerebral palsy in Norway? Full text in Research Archive
• Andersen, Guro Lillemoen; Hollung, Sandra Julsen & Vik, Torstein (2016). Early markers of associated impairments in children with cerebral palsy (CP). Full text in Research Archive
• Hollung, Sandra Julsen; Andersen, Guro Lillemoen; Wiik, Robert; Bakken, Inger Johanne & Vik, Torstein (2016). What is the ”true” prevalence of cerebral palsy in Norway? Developmental Medicine & Child Neurology. ISSN 0012-1622. 58, p. 16–16. doi: 10.1111/dmcn.25_13241. Full text in Research Archive
• Pennington, Lindsay; Andersen, Guro Lillemoen; Kirby, Jennifer; Hollung, Sandra Julsen & Vik, Torstein (2016). Prediction of speech intelligibility of children with cerebral palsy (CP) from characteristics at 2 years of age. Developmental Medicine & Child Neurology. ISSN 0012-1622. 58, p. 12–12. doi: 10.1111/dmcn.15_13241. Full text in Research Archive
• Hollung, Sandra Julsen; Andersen, Guro Lillemoen; Wiik, Robert; Bakken, Inger Johanne & Vik, Torstein (2015). What is the prevalence of cerebral palsy in Norway? Full text in Research Archive
• Hollung, Sandra Julsen; Andersen, Guro Lillemoen; Wiik, Robert; Bakken, Inger Johanne & Vik, Torstein (2015). What is the prevalence of cerebral palsy in Norway? Developmental Medicine & Child Neurology. ISSN 0012-1622. 57, p. 91–92. doi: 10.1111/dmcn.28_12886. Full text in Research Archive
• Andersen, Guro Lillemoen; Hollung, Sandra Julsen & Vik, Torstein (2014). Cerebral MRI Findings In Children With Cerebral Palsy (CP) In Norway. Archives of Disease in Childhood. ISSN 0003-9888. 99. doi: 10.1136/archdischild-2014-307384.547. Full text in Research Archive
• Andersen, Guro Lillemoen; Hollung, Sandra Julsen & Vik, Torstein (2014). CEREBRAL MRI FINDINGS IN CHILDREN WITH CEREBRAL PALSY (CP) IN NORWAY. Full text in Research Archive
• Stadskleiv, Kristine; Andersen, Guro Lillemoen & Hollung, Sandra Julsen (2020). Økt andel barn med cerebral parese som tilbys kognitiv utredning. Sluttrapport fra kvalitetsforbedringsprosjekt med bruk av data fra nasjonale medisinske kvalitetsregistre. Sykehuset i Vestfold. Full text in Research Archive
• Hollung, Sandra Julsen; Andersen, Guro L.; Vik, Torstein & Bakken, Inger Johanne (2019). Surveillance of cerebral palsy in Norway; a national registry-based study. Norges teknisk-naturvitenskapelige universitet. ISSN 9788232641673. Full text in Research Archive Show summary

  Well-established cerebral palsy (CP) registries provide a solid framework to monitor, study and report on CP over time. This includes its causes, diagnosis, clinical manifestations and treatments/interventions. This thesis is a national registry-based study of individuals with CP born 1996 to 2010 and recorded in the Cerebral Palsy Registry of Norway (CPRN) and the Norwegian Patient Registry (NPR). Data from both registries were used to ensure that the studies were population-based. This was performed by linking the CPRN to the NPR, and validating all CP diagnosis codes recorded in the NPR, but not in the CPRN. Article I describes the results of the validation study, and the implications a complete and correct population can have on the calculation of prevalence estimates. The accurate prevalence of CP for individuals born in Norway during this study period is 2.4 per 1000 live births. Article II continued with a more in-depth investigation of the trends in prevalence and severity of CP, using clinical data from the CPRN and supplemented with data from the NPR. We found a significant decline in the prevalence of CP from 2.6 per 1000 live births in 1999 to 1.9 in 2010. This was mostly attributed to a decrease in the more severe bilateral spastic CP subtype (characterized by muscular stiffness on both sides of the body). We also found a decrease in the proportion of individuals with CP and severe motor impairments, epilepsy, intellectual disability and reduced speech. This is the first time a reduction in the prevalence and severity of CP has been reported in Norway. The decline was most likely due to improvements in antenatal, obstetric and neonatal care that have been introduced nationwide throughout the past few decades. To support these findings, we also explored the status of perinatal health for all children born in Norway during this study period, using summary statistics from the Medical Birth Registry of Norway Statistics Bank. There, we found a decline in the prevalence of children born preterm, mothers with preeclampsia during pregnancy and with multiples, all of which are well-known risk factors for CP. In addition, there was also a decline in perinatal mortality. Nonetheless, in article III we found that individuals who did receive a diagnosis of CP during this study period have a considerably higher burden of disease when compared with their peers in the general population without CP. Nearly all individuals with CP were recorded in the NPR with one or more disorders in addition to their CP condition (comorbidities), whether mild-to-severe or transient-to-chronic. When compared with the risks in the general population, individuals with CP had an excess risk for multiple medical, neurological and mental/behavioral disorders. As expected, many of the comorbidities were associated with the injury to the developing brain that caused CP (cocausal) or complications of the main CP condition. However, we also found that many comorbidities were also not intuitively related to CP. This thesis demonstrates the importance of continual surveillance of the CP population in Norway. By monitoring fluctuations in the prevalence and clinical manifestations of CP over time, we can provide up-to-date information to healthcare professionals and support their work in preventing or minimizing the impact of CP.

• Hollung, Sandra Julsen (2015). The Secondary Use of Electronic Health Records (EHR) to Improve Data Quality in Scandinavian National Medical Quality Registries. Northeastern University. Full text in Research Archive
• Wiik, Robert; Andersen, Guro Lillemoen; Hollung, Sandra Julsen & Vik, Torstein (2014). Dokumentkontroll av pasientjournaler med ICD-10-kode for cerebral parese. Validering av resultater fra dekningsgradsanalyse for Cerebral pareseregisteret i Norge og Norsk pasientregister. Helsedirektoratet. Full text in Research Archive

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