Online Study of People With Rare Genetic Changes and Autism Features
Collects health and development information from people with rare genetic changes linked to autism.
Plain-language title generated from the registry record
Registry title: Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight
Key facts
- Where
- Boston and Lewisburg, United StatesSee the 2 sites
Where in United States
- Boston Children's HospitalBoston, United StatesTaking people
- Geisinger Health SystemLewisburg, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Simons Searchlight
- Trial code
- NCT01238250
- Record updated
- 23 July 2026
- Original description
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.Read full original descriptionShow less
Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight
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.
Inclusion: 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.
Exclusion: -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.