Simons Searchlight

Simons Searchlight is an online international research program, building an ever growing natural history database, biorepository, and resource network of over 175 rare genetic neurodevelopmental disorders. By joining our community and sharing your experiences, you contribute to a growing database used by scientists worldwide to advance the understanding of these conditions. Through online surveys and optional blood sample collection, we gather valuable information to improve lives and drive scientific progress. Families like yours are the key to making meaningful progress.

To join the study, you or your family member must have a confirmed genetic diagnosis on the list of those we currently study. The study is international, and families can participate in several languages, including English, Dutch, French, and Spanish. Learn more about what genetic conditions we study and how to participate in other languages at https://www.simonssearchlight.org/research/what-we-study/.

Completing online medical and behavioral histories along with blood samples. Participants are able to complete surveys on their own time and update their information annually. The optional blood samples that we collect are used by researchers to study your condition. Additionally, researchers interested in recruiting Simons Searchlight participants into their own studies can submit an application through SFARI’s Research Match. Approved researchers will receive further information about how to contact families.

You may have access to: subject matter experts to support your research participation, personalized survey result summaries, online rewards for survey completion, registry updates through patient advocacy group conference presentations, opportunities to participate in other research studies and clinical trials, gene guides and quarterly community data reports.

When you participate in research into these genetic conditions associated with autism spectrum disorder, your unique experience is the key to unlocking meaningful scientific advancements. The more we understand the full picture of your rare genetic disorder, the better equipped the medical and scientific communities will be to develop improved treatments, therapies, and support tailored specifically to your needs. As someone directly affected, either yourself or in your family, your first-hand experiences are invaluable – no one else can provide that perspective. Every little detail you contribute helps solve the puzzle, paving the way for life-changing discoveries that improve daily life for those with rare genetic conditions. Your participation drives science one step closer toward meaningful progress for these rare disease communities.