People who get certain genetic findings from SPARK will receive an invitation to join Simons Searchlight as the next step in their research journey. Simons Searchlight is a research program that works with families and researchers around the world to speed up genetics research on autism and related neurodevelopmental disorders.
SPARK aims to find the genetic causes of autism and accelerate autism-specific research projects. Simons Searchlight takes a deeper dive into these rare genetic conditions by collecting detailed information and blood samples, and sharing them with many researchers.
Participants must have one of the over 150 genetic conditions that Simons Searchlight studies. However, participants do not need to have a diagnosis of autism spectrum disorder to be eligible. They may have diagnoses such as epilepsy, language impairment, or intellectual disability. It’s important for us to work together to discover how these different gene changes function in the body, how they affect individuals, and why they may look different in different people.
Many of the genetic changes in Simons Searchlight are extremely rare, which makes them difficult to study. Because Simons Searchlight is open to participants all over the world, we can gather information from many more people and provide better answers for everyone.
People who qualify can create an account, share their SPARK genetic results, complete online surveys, and participate in a medical health interview with a Simons Searchlight genetic counselor. Participants can also provide a blood sample, which researchers can access now and in the future. Importantly, the Simons Searchlight team follows up yearly to check in on how things change, to shed light on what families can expect over time, and to learn what treatments and therapies seem to be working best.
In addition, Simons Searchlight families can connect with other families that share the same genetic diagnosis. They may also have the chance to connect with researchers and participate in additional studies to advance the understanding of their genetic condition. Families learn about the results of the research in which they participate. Some of these studies might be clinical trials with the aim of developing treatments.
Simons Searchlight, like SPARK, is funded by the Simons Foundation, which is a non-profit organization that provides funding in the areas of math and science research.