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Research Participation: How you can help move autism research forward

Date Published: 
April 24, 2014

People with autism and their families often wonder how they can help speed up research on the treatment of autism.

The best way people can contribute is by participating in scientific research.

Photo of a crowdAutism is a complex and varied condition, and many theories exist about what causes it. The studies that scientists need to help them understand this condition will require the participation of large numbers of individuals on the autism spectrum and family members, too. People of all ages with all types of symptoms are needed — from individuals with high-functioning autism to those who don’t speak. Each year, many studies are not completed or are significantly delayed because researchers cannot find enough study participants.

So what can you do as a first step?

Sign up for research at the Interactive Autism Network (IAN).

IAN is an online community in which individuals with autism, their families and qualified researchers throughout the world work together to better understand autism spectrum disorder.

At IAN Research (IANresearch.org), participants provide information in a secure online setting about their diagnosis, symptoms, and the treatment and services they receive, without leaving home. Parents report on their child’s progress over time. Adults with autism share information about their own experiences and challenges. Autism researchers can then access this de-identified information (without knowing who the family is) to study autism.

As a member of IAN, you can also access the IAN Community (IANcommunity.org), an online resource with up-to-date information about autism, where you can learn more about autism and the latest autism research findings.

Simons Simplex Collection: What 2,600 Families Accomplished

The Simons Simplex Collection (SSC) is a study of the causes of autism. In total, 2,600 families with a single family member who has autism generously gave blood samples, answered questions, and were evaluated in person to characterize features of autism. To date, the Simons Simplex families’ data have been used by 180 scientists studying everything from genetics to friendship.

The SSC has already yielded ground-breaking results. For example, using the SSC, scientists confirmed that genetics plays a role in autism. These clear genetic results were possible only because so many people gave their time and energy to participate in the SSC.

The SSC@IAN Web pages describe the significant research progress to date that individuals and families have enabled through their contribution.

Interested in reading even more about the autism science?

SFARI.org, the website of the Simons Foundation Autism Research Initiative, is a news site that reports on new scientific findings in autism from reputable scientists and journals. The site, built for the scientific community as their central resource, is also visited by many families and laypeople to monitor the scientific progress in autism.

Have questions about participating in research or joining IAN?

Please email IAN at TED@IANproject.org.

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