Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight
Launched by SIMONS SEARCHLIGHT · Nov 9, 2010
Trial Information
Current as of May 08, 2025
Recruiting
Keywords
ClinConnect Summary
The Simons Searchlight study is an online research program aimed at understanding how certain rare genetic changes relate to neurodevelopmental disorders and autism. This study collects important information about the health, behavior, learning, and development of individuals with specific genetic conditions. By partnering with families, the study hopes to improve clinical care and treatment options for those affected by these conditions.
Anyone of any age who has a genetic condition listed as eligible can participate, along with their family members. It's important that participants are fluent in English or one of the supported languages, which include Spanish, French, and Dutch. Participants will be able to join the study online using any device with internet access, and they will need to provide consent to take part. The study is currently recruiting, so if you or a family member have one of the eligible genetic conditions, this could be a valuable opportunity to contribute to important research.
Gender
ALL
Eligibility criteria
- 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.
About Simons Searchlight
Simons Searchlight is a pioneering clinical trial sponsor dedicated to advancing research and therapeutic development for neurodevelopmental disorders, particularly those associated with genetic mutations. With a focus on leveraging innovative methodologies and collaborative partnerships, Simons Searchlight aims to enhance understanding of these conditions, facilitate patient recruitment, and accelerate the delivery of effective treatments. By integrating cutting-edge science with a commitment to community engagement, the organization strives to improve outcomes for individuals and families affected by rare genetic disorders.
Contacts
Jennifer Cobb
Immunology at National Institute of Allergy and Infectious Diseases (NIAID)
Locations
Boston, Massachusetts, United States
New York, New York, United States
Lewisburg, Pennsylvania, United States
Patients applied
Trial Officials
Cora Taylor, PhD
Principal Investigator
Geisinger Clinic
Wendy Chung, MD PhD
Principal Investigator
Boston Children's Hospital
Timeline
First submit
Trial launched
Trial updated
Estimated completion
Not reported
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