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Research Participation

Research Participation

Registries, study directories and federal guidance for families who want to take part in autism research — and how to weigh the decision.

Based on SPARK for Autism · SPARK · Autism Science Foundation · ClinicalTrials.gov · NIH Clinical Research Trials and You · NIMH and 3 more · All sources · Checked November 3, 2026

Freeto join SPARK — registration takes about 20 minutesSPARK
1 in 318-year-old children identified with autism in 2022 ADDM Network dataCDC
105studies at 70 sites supported by HRSA autism research programs in FY 2024HRSA MCHB

Taking part in research

Families can join registries, search study directories and volunteer for clinical studies. Participation is voluntary, and federal guidance explains the protections and the questions to ask before you enroll. Listings link to external organizations; they do not imply affiliation, endorsement or guaranteed services, and eligibility, availability and costs change — confirm directly with each organization.

Registries and study directories

NonprofitSPARK for AutismSPARK is a free, online, long-term autism study open to anyone living in the U.S. with a professional autism diagnosis and their family members; registration takes about 20 minutes.Visit official resource NonprofitSPARK — Why joinWhat participation involves — online surveys, optional saliva samples for genetic analysis and invitations for relatives — and what participants receive; the page notes about 10% of participants are expected to get genetic results related to autism.Visit official resource NonprofitAutism Science Foundation — Participate in ResearchThe Autism Science Foundation’s searchable directory of autism studies, filterable by age group, location and in-person or remote participation; icons show whether a study offers an incentive, results or access to services.Visit official resource Federal agencyClinicalTrials.govClinicalTrials.gov holds clinical study records with a term search and glossary; age groups are listed as Child (birth–17), Adult (18–64) and Older Adult (65+).Visit official resource

Federal guidance before you enroll

Federal agencyNIH Clinical Research Trials and YouNIH’s Clinical Research Trials and You explains why people participate, the basics, how to find a trial, personal stories and resources for parents considering enrolling a child.Visit official resource Federal agencyNIMH — Clinical Trials: Information for ParticipantsNIMH explains what trials are, the protections such as institutional review board oversight, the right to withdraw at any time, and ways to find studies including the NIH Clinical Center, ClinicalTrials.gov and ResearchMatch.Visit official resource Federal agencyNIMH — Join a Study (NIH Clinical Center)How to join an NIMH study at the NIH Clinical Center in Bethesda, Maryland, with inpatient and outpatient options for children and adults.Visit official resource

Where the research stands

Federal agencyInteragency Autism Coordinating Committee (IACC)The Interagency Autism Coordinating Committee publishes the IACC Strategic Plan, the Summary of Advances in Autism Research and portfolio analyses, and invites public comment.Visit official resource Federal agencyCDC — Data and Statistics on Autism Spectrum DisorderCDC’s ADDM Network data: about 1 in 31 (3.2%) children aged 8 identified with autism in 2022, with links to a data tool and community report.Visit official resource Federal agencyHRSA Maternal and Child Health Bureau — AutismHRSA’s Autism Research Networks and Single Investigator programs supported 105 studies at 70 sites in fiscal year 2024, enrolling 10,296 participants in primary research.Visit official resource

Questions to ask

  • What will my family be asked to do, and how long will it take?
  • Is there any cost, travel or compensation?
  • How is our data protected, and can we withdraw at any time?
  • Will we receive results, and does the study offer evaluations or services?
  • Who reviewed the study for safety and ethics?

This website provides general educational information. It does not diagnose autism or replace individualized medical, developmental, psychological, or educational advice. Screening is not diagnosis.

External listings do not imply affiliation, endorsement, or guaranteed services. Eligibility, availability, costs, and insurance coverage may change. Research summaries reflect evidence available at the time of review.