Simons Searchlight is an evolving research registry. As we look to the next 10 years, here are some highlights of what we have achieved together so far.

1. First Participants

Simons Searchlight’s first participants were from the USA, Canada, and Australia (orange). We now have participants from 47 different countries (turquoise).

Simons Searchlight is one of the largest international rare disease registries. If you have a genetic diagnosis on our list, consider registering!

2. First Family Conference

Simons Searchlight (formerly Simons VIP) participants held their first in person family conference on July 23, 2011 in Gatlinburg, Tennessee for 16p11.2 deletion and duplication families.

Simons Searchlight’s online meeting recordings can be found here.

3. Online Participation

Our study was originally in person and transitioned to an online platform in 2014. This has allowed more families to join and provided more detailed information a few times a year.

Simons Searchlight has registered more than 1,500 individuals with a genetic diagnosis.

4. Publications

To date, researchers have used Simons Searchlight data in 63 publications and preprints.

You can find our list of publications here. Make sure to click the “Uses Resources From: Simons Searchlight” filter.

5. Single Gene Publications

First publication from a monogenic condition on the Simons Searchlight gene list was in 2018.

This publication can be found here. Another publication using SCN2A Simons Searchlight data was published in 2020.

6. Becoming Simons Searchlight

Through the collaboration with families, Simons VIP Connect became Simons Searchlight in Spring 2019 to represent the beacon of light provided for our journey by research.

The name Simons Searchlight better embodies our mission to shed light on conditions by building strong partnerships between researchers and families.

7. Making Stem Cells

In the fall of 2020, the Simons Foundation invested heavily in making induced pluripotent stem cells, or iPS cells, from Simons Searchlight participants.

Our short video on iPS cells can be found here. The Simons Foundation Autism Research Initiative (SFARI) announcement can be found here.

8. Research Match

Simons Searchlight Research Match launched in 2020. This allows researchers to add new surveys not already included in the core study, as well as recruit participants to new research studies. All of the data are returned to the Simons Searchlight database to help build the registry and provide more information to future researchers with no additional burden on you.

Researchers can apply for the Research Match program through SFARI Base, the same website they use to request data.

9. Data Access for Researchers

130 researchers have accessed the Simons Searchlight data to date!

Researchers request de-identified data, samples, or research match projects through SFARI Base. De-identified data are data in which any identifying information has been removed.

10. Gene Therapy Workshop

In the winter of 2020, SFARI gathered a group of researchers for a gene therapy workshop to help accelerate the development of treatments.

Read here to find out more about this workshop.