Today, ASF announced that it will be leading the newly-launched Alliance for Genetic Etiologies of Neurodevelopmental Disorders and Autism (AGENDA). This alliance is a partnership of research and advocacy organizations focused on improving outcomes of individuals with all forms of autism by fostering a genetics-first approach to autism science. AGENDA will also work to strengthen collaborations among organizations representing genetically-defined disorders associated with autism. As part of its collaborative activities, today AGENDA launched a new online portal that will make it easier for researchers to investigate different forms of autism. Clinicians, basic scientists, industry, and multiple end users of this information were consulted on the development of the portal, which along with contact information to access the data in each registry, can be found here.
AGENDA’s First Initiative is a Unified Registry of Family Data
ASF is proud to announce continued support for the Baby Siblings Research Consortium (BSRC), a network of over 33 research sites around the world studying the younger siblings of people with autism. The Baby Sibs database now tracks over 5,000 younger siblings, with and without autism. The database has been used to develop more sophisticated screening and diagnostic approaches, to understand early biological features of ASD even before symptoms develop, and to inform clinicians of early treatment targets. The additional funding will allow researchers to continue submitting information to expand data points so that a deeper understanding of development across the lifespan can be made. ASF support will also allow scientists to collaborate on key issues like early biological testing and searching for biomarkers of ASD.