Simons Simplex Collection: Updated medical and educational data now available

May 5, 2017

Updated medical, developmental and educational outcomes information on a subset of families who participated in the Simons Simplex Collection (SSC) — a total of 440 families — is now available to approved researchers via SFARI Base. Researchers may also apply via SFARI Base to re-contact this subset of families for additional research studies.

Autism Research Initiative (SFARI)

A man, woman, and boy stand together smiling. The man wears a white shirt and jeans, the woman wears a black dress, and the boy has on a dark blazer and white shirt, all against a plain light background. — SSC family participants

The Simons Simplex Collection (SSC) is a unique and rigorously characterized sample of 2,644 simplex families. Each family includes one child with an autism spectrum disorder (ASD) and unaffected biological parents. More than 80 percent of the families also have at least one unaffected sibling.

A subset of approximately 1,500 families who participated in the SSC is enrolled in an online research registry at the Simons Simplex Community@Interactive Autism Network (SSC@IAN). In 2015, SFARI re-contacted SSC@IAN families to request updated medical, developmental and educational outcome information on all family members. Data from participants who contributed to this re-contacting project — a total of 440 families — are now available to approved researchers via SFARI Base.

“With time, some of the original simplex families are now multiplex families, and we have seen how autism has evolved in the proband. We believe that information will be useful to researchers studying the SSC,” says Wendy Chung, director of clinical research at SFARI.

Researchers may also apply via SFARI Base to re-contact this subset of families for additional research studies. The Recruitment Process Document provides answers to many frequently asked questions.

For more information, please contact [email protected].