What is this study trying to find out about rare genetic changes and autism?

This study is observing medical and developmental information from people with rare genetic changes linked to autism and neurodevelopmental disorders. It aims to improve clinical care and treatments by sharing data with qualified researchers. The Simons Foundation supports this research to help families affected by these genetic differences.

Who may be eligible for this rare genetic conditions clinical trial?

People of any age who have a genetic condition on the study's eligible list or their biological family members may be eligible. Participants must be fluent in English or supported languages like Spanish, French, or Dutch, and able to participate online. Please review eligibility criteria for more details.

Is there any cost to participate in this rare genetic conditions clinical trial?

Study-related care, including participation and all trial visits, is provided at no cost. Personal travel or other expenses may vary and are not guaranteed to be covered. Participants can take part remotely, which may reduce travel needs.

Actively Recruiting

All Genders

ID01238250

International Online Research Program for People with Rare Genetic Variants Linked to Autism and Neurodevelopmental Disorders

Led by Simons Searchlight · Updated on 2026-07-23

100000

Participants Needed

Research Sites

N/A

Total Duration

AI-Summary

What this Trial Is About

Researchers are conducting an international observational study called Simons Searchlight to learn more about families affected by rare genetic changes linked to neurodevelopmental disorders and features of autism. The study aims to improve clinical care and treatments by collecting detailed medical, behavioral, learning, and developmental information from people with these genetic variants. Participation is available to English and Spanish-speaking families worldwide, supporting remote involvement. Participants provide medical and developmental data through online or phone-based formats and may donate blood or saliva samples for genetic analysis. These samples are connected with the collected data to better understand how specific gene changes impact individuals. Personal identifying information is removed to protect privacy, and qualified researchers worldwide can access the anonymized data. During the study, participants share baseline information over about one month, with ongoing data collection occurring regularly to track changes over time. This includes medical histories, behavioral assessments, and developmental progress. The study is designed to gather comprehensive, long-term information to support research into targeted treatments and improved care for individuals with genetic and developmental differences.

CONDITIONS

Brief Title

Online Study of People Who Have Genetic Changes and Features of Autism: Simons Searchlight

Who Can Participate

All Genders

Eligibility Criteria

You may qualify if you...

Subjects of any age with a genetic condition on the eligible list or their biological family members
Fluency in English, Spanish, French, or Dutch
Ability to register and participate through an internet-connected device
Ability and willingness to provide consent

You will not qualify if you...

Genetic changes with regions or variants deemed ineligible during laboratory review by certified genetic counselors
Specific ineligible regions or variants that may change over time

Research Team

Simons Searchlight Study Coordinator

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