Participate in Research

Why families take part

Clinical research is medical research that involves people. NIH explains that groundbreaking advances were possible only because volunteers — both healthy people and people with a condition — took part. People join for different reasons: to help others and move science forward, to be part of discoveries that may help families in the future, and sometimes to gain access to a treatment that is not yet widely available. ClinicalTrials.gov is clear that participants may or may not get any benefit themselves, and that in trials researchers often do not yet know whether an intervention will be helpful, harmful, or the same as regular care.

What participation can involve

Studies take place at hospitals, clinics, research centers and universities, and also over the phone or on the internet. They may last days, weeks or years. Researchers collect data through surveys or questionnaires, images such as MRIs, measurements such as height and weight, or samples such as blood or saliva. NIMH notes that study teams monitor participants closely, which may mean more tests or exams than standard care, and sometimes a health log or questionnaires. Some studies pay participants or cover travel, lodging or food; not all do. The informed consent form describes any payments and costs.

Who protects participants

Most clinical research in the United States is reviewed and monitored by an Institutional Review Board (IRB) — an independent committee of physicians, statisticians and community members — to make sure risks are as low as possible and are outweighed by potential benefits, before the study starts and as it proceeds. NIH suggests asking the sponsor or research coordinator whether the study you are considering was reviewed by an IRB. The federal Office for Human Research Protections (OHRP) works to protect the rights, welfare and wellbeing of volunteers in HHS-supported research, and the FDA oversees trials of drugs and devices it regulates.

Voluntary, every step of the way

Before joining, you receive information about the study through the informed consent process, and research staff are available to answer questions. Signing the consent form does not lock you in: NIH, ClinicalTrials.gov and NIMH all state that taking part is voluntary and that you can leave a study at any time, for any reason. If you decide to leave, you can talk with the research staff to do so safely. What informed consent must tell you.

Where families look for studies

• ClinicalTrials.gov — a searchable registry and results database of federally and privately supported studies in the United States and around the world. On 3 November 2026 the site listed 610,050 studies with locations in all 50 states and in 226 countries and territories. Listing a study does not mean the U.S. government has evaluated it.
• ResearchMatch — a free, NIH-funded registry that connects people who want to find studies with researchers who are looking for volunteers.
• Your health care provider — NIMH suggests talking with your provider, and telling them if you enroll so your care can be coordinated.
• Autism Science Foundation — maintains a searchable directory of autism studies that can be filtered by age group, location and in-person or remote participation; listings show what kind of incentive, if any, a study offers.

Autism Family does not recommend specific studies. Any decision belongs to you and your family, with advice from your health care professionals.

A seat at the table

The Autistic Self Advocacy Network holds that research should include autistic people and benefit them, and supports community-based participatory research — in which members of the community help shape the studies that are about them — under the principle “nothing about us, without us.” At the federal level, the Interagency Autism Coordinating Committee (IACC) advises the Secretary of Health and Human Services on autism, includes both federal and public members, holds meetings open to the public, and reserves part of each meeting for public comment.