Status:
RECRUITING
Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight
Lead Sponsor:
Simons Searchlight
Collaborating Sponsors:
Geisinger Clinic
Boston Children's Hospital
Conditions:
16P11.2 Deletion Syndrome
16p11.2 Duplications
Eligibility:
All Genders
Brief Summary
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...
Detailed Description
Simons Searchlight has expanded over the last several years to include additional gene changes and participation through remote formats, either online or by phone. This allows English and Spanish-spea...
Eligibility Criteria
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.
Key Trial Info
Start Date :
October 1 2010
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
October 1 2050
Estimated Enrollment :
100000 Patients enrolled
Trial Details
Trial ID
NCT01238250
Start Date
October 1 2010
End Date
October 1 2050
Last Update
June 6 2025
Active Locations (2)
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1
Boston Children's Hospital
Boston, Massachusetts, United States, 02115
2
Geisinger Health System
Lewisburg, Pennsylvania, United States, 17837