How to get involved in our research?

Here you can find the information you need about participation in the research projects at K.G. Jebsen centre for Neurodevelopmental Disorders, and what this entails.

Much of the research at the K. G. Jebsen centre for Neurodevelopmental disorders transpire through the BUPGEN study.  

Why should I participate?

By participating, you can contribute to the discovery of important new knowledge that could make a change for other people. 

Neurodevelopmental disorders occur in childhood and adolescence, and are linked to the delayed or abnormal development of the nervous system. The nature of the neurodevelopmental disorders varies between individuals: some experience great difficulties, whilst others only experience some limited issues.

We know that some genetic variants lead to higher risk of neurodevelopmental disorders, but otherwise we know very little about why some children and adolescents develop differently from others. The goal of this project is to increase our knowledge regarding the cause, course and treatment of some neurodevelopmental disorders, and thus contribute to better treatment and follow-up for children and adolescents with these types of issues. This is done through several different projects organised under the thematic study BUPGEN, for which Oslo University Hospital is responsible

Who can participate?

We are interested in recruiting several different participants for this study.

  • People with symptoms of neurodevelopmental disorders and that are being examined for this or have received a diagnosis (for example autism spectrum disorder).  
  • People who are proven to have specific genetic variants that leads to increased risk of neurodevelopmental disorders (for example DiGeorge syndrome).
  • People without symptoms or genetic findings as a comparison group, this can also be parents or siblings.
  • The BUPGEN study is open for people of all ages

What does participation entail?

We would like to collect data from your medical records from the hospitals that have examined and treated you for neurodevelopmental disorders. Additionally, we would also like to store and analyse genetic material from blood samples taken from you. If a blood sample has not already been taken, we would like to take another blood or saliva sample. The study also involves the retrieval of data about you from various health registers (including registers of births, prescriptions, welfare and vaccinations, the National Patient Registry, and Norwegian Statistics Bureau’s family and social registry. An updated list can be found online at: https://www.helsenorge.no/en/health-registries/), as well as from your general practitioner and health facilities. You may also be asked at a later time to participate in other projects associated with BUPGEN.

You may also participate in our sub-project, which includes brain scans using an MRI-machine. As part of BUPGEN, we would like to analyse the scans from the MRI, and see whether there are any specific relation between the brain and the illness.

Your consent to participate means that data about you will be stored in a research database and used in studies that are investigating neurodevelopmental disorders in compliance with the specific study aims.

 All the studies included have been approved by REC.

You will receive information about the studies that may wish to include you through our website. If you do not wish to participate in a particular study, you can inform the hospital and the contact person for the study. You will receive a confirmation that your wish has been taken into consideration.

Which examinations are relevant for the study?

-    DNA-samples (blood or saliva)
-    MRI
-    EEG

What will happen to my test results and health information?

Samples that are taken and the data that are registered about you will only be used as described in the BUPGEN research aims. All information from the various tests will be kept strictly confidential and will not be accessible for unauthorised use. All persons in connection to the project has sworn an oath of confidentiality. The results from the research will be published on a group basis in such a way that it will be impossible for individuals to be recognised. 

Your biological material and your clinical data may also be used by other collaborating research groups in Norway and internationally. This may include countries with less secure data protection laws compared to Norway, but in these cases, your data will be deidentified beforehand.

You may contact the hospital if you would like more detailed information about where and how your information will be used. In accordance with data protection laws, Oslo University Hospital, which is responsible for the controlling and processing of the data, and project leader Ole A. Andreassen have an independent responsibility to ensure that your data are treated in a lawful manner. This project has a legal basis in accordance with articles 6 and 9 of the EU General Data Protection Regulation (GDPR).
 

Information and consent form (electronic):
 

Information and consent form for participants under 16 years

 

Information and consent form for participants over 16 years

 

Information and consent form - MRI (electronic):
 

MRI - Information and consent form for participants under 16 years

 

MRI - Information and consent form for participants over 16 years

 

Consent form (PDF)

Contact us:

Published Nov. 11, 2021 12:12 PM - Last modified Nov. 12, 2021 3:16 PM