Interested in Autism and Neurodevelopmental Disabilities Research? LINCATS is excited to introduce the Stony Brook Autism Registry. This Registry consists of more than 4,000 autistic (and non-autistic) individuals (children, adolescents, and adults), as well as family members, providers, and educators, recruited over more than a decade, who have consented to be contacted by Stony Brook faculty for future research study involvement.
Please join us to learn more about this new resource and how you might access it!
Join Zoom Meeting
https://stonybrook.zoom.us/j/99262856718?pwd=ifkmsk8Fbd06IL9DMaarN0xat9GXpb.1
Meeting ID: 992 6285 6718
Passcode: 376083
How and Why was the Stony Brook Autism Registry Developed
Autism is a complex, heterogeneous neurodevelopmental disability. It is crucial to have a rich, active contact database for researchers across any given institution to reach this population. Many autism research centers have surmounted challenges in recruiting and engaging the autism community by establishing university-wide registries that are available to researchers who become users of the designated protocol. Such registries are the foundation of rich and effective research programs. Stony Brook has such a foundation, built for over a decade through outreach work by Dr. Matthew D. Lerner (Research Director, Stony Brook Autism Initiative) and colleagues throughout the University community.
Use of Stony Brook Autism Registry can be beneficial to researchers with a multitude of research interests, including: social and developmental questions; neurobiological, medical, and genetic interests; and applied/translational aims. The Registry can also be a useful resource to reference as part of Federal and Foundation grant applications.
Benefits to utilizing the Stony Brook Autism Registry include:
- A ready group of diverse participants for studies related to autism, other neurodevelopmental disabilities, and development across the lifespan more broadly (ranging from childhood through adulthood).
- Notably, there is a large non-autistic sub-cohort within the Registry as well (who may or may not meet criteria for other mental health conditions such as ADHD, anxiety, and/or depression).
- Access to area agencies and schools to help with broader recruitment.
- An opportunity to engage in community-driven research through ongoing contacts with Registry participants.
- An available population for pilot studies or hypothesis-generating research.
- A large sample for inclusion in larger grant-funded research.
- A chance to “give back” to the local autism community, who often views Stony Brook as an invaluable resource and source of support.
- A foundation for collaboration within and beyond the Stony Brook community.
How can I get involved as a Stony Brook faculty member?
We are looking to ascertain interest in the Stony Brook Autism Registry across the University and Stony Brook Medicine at this time. So, if you:
- Currently conduct autism and/or other neurodevelopmental disabilities research.
- Currently conduct social, cognitive, neurobiological, medical, or developmental research.
- Are interested in potentially conducting autism, neurodevelopmental disability, and/or other developmental research, or including autistic individuals in your research in the future.
- Provide, or may provide, services and/or supports to autistic people and their families.