Our Commitment

Mission Statement

In order to create scientific breakthroughs for rare genetic neurodevelopmental disorders, families and scientists must come together. Simons Searchlight‘s mission is to shed light on these disorders by collecting high-quality, standardized natural history data and building strong partnerships between researchers, industry and families.

Mission Overview

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.

Our team and advisory committee

The Simons Searchlight team comprises scientists, doctors, data analysts, genetic counselors, research coordinators, product developers, and communication specialists. We are here to make your research participation as easy as possible. Additionally, our Community Advisory Committee guides us in centering our participants’ voices in all that we do, ensuring that our study adapts to the diverse needs of our community.

We all work together to learn about your condition and the issues you face, and to help find answers to improve your clinical care and management. We believe we can improve the care of individuals today by sharing your collective experience while supporting scientists to develop additional treatments and tools for the future.

You, and families like yours, share valuable information and experiences, helping leading geneticists and scientists around the world to improve the lives of people living with rare genetic neurodevelopmental disorders. These researchers can also invite families to participate in their research studies in the future.

People with genetic diagnoses, their families, and scientists play equal parts in this journey.

Long-Term Commitment to Research

The Simons Searchlight research study has been well-established for over thirteen years and is supported with long-term funding by the Simons Foundation Autism Research Initiative. The Simons Searchlight team is made up of many talented staff members and is led by two principal investigators: Wendy Chung, M.D., Ph.D., and Cora Taylor, Ph.D.

Chung is a world-renowned doctor and geneticist. She has authored over 600 peer-reviewed scientific articles and 75 scholarly chapters and won several awards as a doctor, researcher, and professor. Read her full bio.

Taylor has many years of experience working with rare neurogenetic communities. She is a licensed clinical psychologist and performs diagnostic evaluations with children who have a range of developmental conditions and rare genetic conditions. She also researches neurodevelopmental disorders broadly, with a focus on individuals with rare genetic conditions. Read her full bio.

  • Relevant video: Taylor’s Q&A on Behavioral Interventions for the Simons Searchlight Community

Why Should You Participate in Simons Searchlight?

When you participate, your experiences help the medical and scientific communities to understand your rare genetic disorder. Because your genetic condition is rare, your unique experience is the key to unlocking meaningful scientific advancements.

To join the study, you or your family member must have a 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. We plan on adding more languages over time.

Learn more about what genetic conditions we study and how to participate in other languages.

See the graphic below for more information about our goals.

The Value of Collecting Participant Data and Sharing Information Back with Families

The main focus of Simons Searchlight is to shed light on rare genetic conditions by collecting high-quality information and building strong connections between researchers, families, and patient advocacy partners. The data we collect will help to provide a better understanding for your community, researchers, and doctors of what it means to have your genetic condition.

  • First, we collect detailed medical and behavioral histories through various online surveys. The optional blood samples that we collect are used by researchers to study your condition. We make these data and samples freely available to qualified researchers. Read more about all the data we collect from participants.
  • Second, we strive to not only collect data but also provide timely information back to participants. We summarize the information that you provide and share results back with you in multiple ways, such as patient group conference presentations and quarterly reports. We are always looking for new opportunities to provide valuable information back to the community. In addition, we connect you with medical experts through conferences, webinars, networking, and other community support.

Your participation may not yield immediate treatments, but your involvement can lead to important insights for your family and future families. By comparing participant experiences within a given condition, we can learn what works and what doesn’t work. We track health and development over time because things change over the life course. We want to help answer questions about what to expect in the future for people with these rare disorders. We also make it easy for you to connect with researchers who are planning new research studies and clinical trials through our Research Match program.

Sharing Data and Biosamples with Researchers

By collecting your information and updates from you over time, we will all learn more about how your genetic disorder may change as people get older. Overall, we aim to make it easier for researchers to study your condition, with a focus on generating knowledge that is useful and of high priority to participants.

This is why one of the core principles guiding all that we do is to ensure that de-identified data are shared widely with researchers around the world.

We believe that broad access to these data will speed up the pace of research, so we readily share de-identified data and samples with qualified researchers. The Simons Foundation Autism Research Initiative maintains a portal called SFARI Base that is devoted to sharing resources with the research community.

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.

Additional relevant resources:

Contact Information

We understand that you may have questions about research participation, and we are here to help. If you have any questions at any point in your research journey, please feel free to reach out to our Simons Searchlight team at coordinator@simonssearchlight.org or by phone at 1-855-329-5638.