Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight
Recruiting · NCT01238250 · Observational (researchers observe without assigning treatment) · Lead sponsor: Simons Searchlight
View the official record on ClinicalTrials.gov →What this trial is about
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.
Who can take part
Age range
No age limits stated
Sex
All (male and female)
Healthy volunteers
No - a diagnosis or condition is required
Phase
Not specified
Study type
Observational (researchers observe without assigning treatment)
Inclusion criteria
- 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 criteria
- 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.
Where it is running
2 locations listed across 2 US states.
- Boston Children's Hospital - Boston, Massachusetts, United States
- Geisinger Health System - Lewisburg, Pennsylvania, United States