NCT01238250Recruiting
Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight
Source: ClinicalTrials.gov · Last updated 23 Jul 2026
Brief summary (registry, in English)
Simons Searchlight is an observational, online, international research program for families with rare genetic variants that cause neurodevelopmental disorders and may be associated with autism. Simons Searchlight collects medical, behavioral, learning, and developmental information from people who have these rare genetic changes. The goal of this study is to improve the clinical care and treatment for these people. Simons Searchlight partners with families to collect data and distribute it to qualified researchers.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 100000 (estimated)
- First submitted
- 9 Nov 2010
- Start date
- Oct 2010
- Primary completion date
- Oct 2050
- Lead sponsor
- Simons Searchlight
- Diseases
- Epilepsy
- NCT number
- NCT01238250
What you commit to
- Study type: Observational
- Planned participants: 100000
- From Oct 2010 to the primary completion date, Oct 2050
- 2 sites in 1 country
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Lab values
- -Some genetic changes that we study have regions or variants that are not eligible for our research. This is determined during our laboratory review that is completed by trained and certified genetic counselors. These specific ineligible regions or variants can change frequently.
Who the study is looking for
- Subjects of any age with a genetic condition on our eligible list along with their biological family members. Current list can be found at: https://www.simonssearchlight.org/research/what-we-study/
- Must be fluent in English or a supported language. Current supported languages are Spanish, French, and Dutch, with more to come.
- Able to register and participate through our online platform, which can be accessed through any device able to connect to the internet.
- Able and willing to provide consent.
Sex: All · Does not accept healthy volunteers
Sites (2)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Boston Children's Hospital Coordinator of this site? Confirm its status | Boston | United States | Recruiting |
| Geisinger Health System Coordinator of this site? Confirm its status | Lewisburg | United States | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.