Yana Wilson

My main research interests are investigating genetic variation that contributes to cerebral palsy and other neurodevelopmental disorders, predominantly in multiplex families with multiple neurodevelopmental disorder phenotypes; as well as harmonization and management of big data assets. I am passionate about working with people with lived experience in all phases of my research, as well as how we can ethically and effectively share participants data to drive discovery and healthcare outcomes. I recently published research where we asked people with CP and their families’ their opinions of genetic research in CP (Wilson et al., Public Health Genomics 2021). This research resulted in an interview with Amanda Heidt from The Scientist. I am a founding member and current Governance Council member of the International Cerebral Palsy Genomics Consortium (ICPGC; www.icpgc.org). Related papers include a whole exome evaluation of 250 individuals with CP (Jin SC, et al. Nature Genetics 2020), and the ICPGC consensus statement on the clinical diagnosis of CP considering genomic findings (MacLennan et al. Journal in Child Neurology 2019), and the development of common data elements for use in genomic studies of CP (Wilson YA et al. DMCN 2022). As part of the ICPGC, I lead the development of the CP Commons, a global genome-phenome data sharing platform where researchers and clinicians can deposit, exchange, and access genomic and clinical data from people with cerebral palsy. Related report includes the CP Commons Launch Report (2021). As part of this work with the ICPGC, I was also recently awarded a grant to aggregate existing genomics datasets to identify genetic variation that contributes to CP aetiology (CPARF). I am also a current member and biocurator of the ClinGen Gene Curation Expert Panel for Cerebral Palsy.