Neurodevelopmental Disorder Study
Genetics and environment in brain development: a twin study
Neurodevelopmental disorders like epilepsy, intellectual disability, autism and cerebral palsy affect the way your brain develops. Since people often have more than one neurodevelopmental disorder, scientists believe that they sometimes have a common cause.
The Neurodevelopmental Disorder Study invites monozygotic (identical) twins who are differently affected by one or more of these disorders to participate. We want to understand the causes of the differences in these twin pairs.
We hope that this will help us to predict babies at risk of developing a neurodevelopmental disorder, so that doctors can more closely watch these babies develop and design better therapies or treatments for them.
Meet the researchers and learn more about the importance of this study.
What will participants do?
If you agree to participate, the researchers will:
- Collect a blood sample (approximately 1 tablespoon) from you and your twin, and from your mother and father. The blood sample will be used to provide a high quality sample of DNA required for many new genetic tests, and both blood and DNA will be stored in the biobank at the University of Adelaide for future research.
- Use some of the blood collected from you and your twin to extract white blood cells. Some of these cells (called B-cells) will be altered in the laboratory by a virus so that they can continue growing indefinitely to provide an ongoing supply of DNA and other cellular materials for our research – this is called a lymphoblastoid cell line. This means that we shouldn’t need to come back and ask you for more blood later.
- Collect a buccal swab sample (cheek swab) from you and your twin and your mother and father. This can be posted back to the biobank team at the University of Adelaide. We will use this swab to extract an additional DNA sample. This sample will be used for identifying changes to DNA which are only present in a small proportion of cells.
- With your consent, access and store the following clinical and medical information:
- Supplementary Birth Record Forms for you and your twin. This is a form filled in by midwives after each birth. This form also contains basic clinical information about the pregnancy, birth and hospital stay. These records are kept by the State Perinatal Data Collection Unit.
- Clinical information collected by other registers, for example the Cerebral Palsy and Birth Defects Registers, about the details of diagnosis, if appropriate.
- Other clinical/medical information that may be relevant to this research, including information obtained through a GP or medical specialist where you provide us with their contact details.
We will use this data to identify processes during pregnancy or birth, which might have contributed to clinical differences between twins, and provide us with detailed information about the diagnosis, which is important for interpreting genetic data.
You can consent to any or all of these extra clinical information requests. All data obtained through these data linkages is confidential and will be linked only by a code number to our research results. At all times the research results will not identify the individuals or families involved.
Participants will be provided with a $20 gift card as a reimbursement for travel costs once the blood and buccal samples have been provided and consent forms completed.
Who can help?
- Identical twin pairs and their parents
- Currently aged less than 25 years of age
- Differently affected by epilepsy, cerebral palsy, autism or an intellectual impairment
This study has been given the approval of the Women’s and Children’s Health Network (WCHN) Human Research Ethics Committee (HREC). If you have any concerns or complaints about this research, please contact the WCHN Research Secretariat on (08) 8161 6521.