The Simons Foundation Autism Research Initiative (SFARI) is pleased to announce that Simons Searchlight (previously known as Simons VIP) has launched a research matching program, through which researchers can apply to recruit individuals enrolled in Simons Searchlight into new research studies.
Simons Searchlight is an initiative of SFARI that aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder. 147 genes and 20 copy number variants (CNVs) are currently being studied as part of this initiative, and more than 1,500 individuals are registered in Simons Searchlight. More than 50 research papers have already been published as a result of data and/or biospecimens collected from Simons Searchlight families. The number of families participating in Simons Searchlight is expected to grow significantly in the coming years, and so are the research opportunities for both families and investigators studying these conditions.
Researchers interested in recruiting Simons Searchlight participants into their studies can submit an application via SFARI Base. Approved researchers will receive further information about how to contact families.
“We are excited to launch this research matching program for Simons Searchlight,” says Wendy Chung, director of clinical research at SFARI, Principal Investigator of Simons Searchlight and SPARK (Simons Foundation Powering Autism Research for Knowledge), and the Kennedy Family Professor of Pediatrics in Medicine, Columbia University. “Simons Searchlight is a community of incredibly dedicated families who are motivated to participate in research. By facilitating study recruitment through this program, we will help to catalyze research and answer important questions that will ultimately improve the lives of those affected by these rare genetic conditions.”
The number of participants with variants in individual genes and CNVs can be found here. The latest phenotypic data were released in September 2020 and are available to approved researchers via SFARI Base. Researchers will be able to link these data to their new research study data as part of the recruitment process. Neuroimaging and genetic data, as well as biospecimens, are available for a subset of individuals.
For more information about the research matching program, please contact firstname.lastname@example.org.