Simons Searchlight is a research registry for SLC6A1 that works with families and researchers around the world to help speed up research on rare genetic neurodevelopmental disorders.

By collecting detailed information and blood samples, Simons Searchlight takes a deep dive into these disorders. They share the information and blood samples with leading geneticists and scientists around the world to use to improve the lives of people living with rare genetic neurodevelopmental disorders. Participation is open worldwide to people who speak English, Dutch, French, and Spanish, and more languages are coming soon.  All your information is kept private and will go a long way toward assisting researchers who are trying to understand how SLC6A1 affects our children.  Sign up with Simons Searchlight and you will receive Amazon gift cards as a courtesy for your time.

People of any age with a SLC6A1 diagnosis and their family members can sign up.  Register today!

Ciitizen is a next-generation digital Natural History Study for SLC6A1-related disorders.  Ciitizen uses medical records to collect meaningful information on how a mutation in the SLC6A1 gene has affected a person’s life.

Important information that can accelerate research is often trapped in medical records.  As a result, drug researchers can’t access the information they need to advance treatments.  But as a patient, you can unlock your records and contribute them to research in a private, anonymized, and secure way.

In addition to giving researchers access to cumulative data on medications, tests, labs, and medical notations, all participants will have access to their own information and can even download it to keep for their own records or share with any new providers they may see in the future.

The information gathered from health records will be used to further research and find better treatments for the SLC6A1 community.  It will inform clinical researchers how our disease changes over time and help speed up clinical trials, reducing the timeframe from years to months.  Academic researchers will have free access (with IRB approval) while industry and pharmaceutical partners will pay a fee.  SLC6A1 has two biotech/pharmaceutical companies waiting for our data right now.   Sign up here at

Patient Directory

If you would like to be included in our patient community directory to receive updates and newsletters, please contact Amber Freed at

More FAQs?  The National Institute of Health provides an informational overview.

%d bloggers like this: