Genetic research in cerebral palsy is a relatively new but exciting area of research. Presently there are only a handful of researchers around the world who are actively researching genetics in CP, and their results so far tentatively suggest that up to 35% of CP may be attributed to underlying genetic causes. To learn more about the role of genetics in CP, these researchers have identified the need to work together, and as such they have very recently formed the International Cerebral Palsy Genomics Consortium. To maximize the value of already completed and future studies, these researchers would like to combine CP genetic data (and the clinical information associated with that data) into one large research database. The Cerebral Palsy Research Network (CPRN) applauds this effort and plans to explore the potential of this work in conjunction with the CPRN Registries.
While there has been a lot of discussion surrounding policy issues in genetics and genomics, most of the commentary has come from researchers, lawyers and policy makers. Considering that your genomic data belongs to you, CPRN would like to know families’ views and preferences on how genetic information is handled and potentially shared with researchers.
If you are a person with cerebral palsy or the parent of person with CP, we ask that you take the following survey regarding your attitudes toward the topic of genetics research in CP. https://surveys.sydney.edu.au/surveys/?s=AnZV7tDs8p
The Cerebral Palsy Alliance’s Human Research Ethics committees have approved this project.