One of the greatest challenges for autism researchers has been finding families to take part in research. autismMatch is designed to overcome this barrier by making it easy for families and researchers to find each other.
autismMatch was funded initially in 2009 by the National Institutes of Health (NIH) under a federal stimulus grant to the Center for Autism Research at The Children’s Hospital of Philadelphia. By funding autismMatch, the NIH acknowledged the need to move autism research forward at a swift pace.
1 out of 88 individuals has an autism spectrum disorder, up from 1 in 150 in 2002 and 1 in 500 in 1990. Yet all of these individuals are not alike; scientists know that autism is heterogeneous and treatments that work for some individuals have little or no effect for others. In order to make discoveries that are valid and meaningful, many research projects require large sample sizes: in other words, many people are needed to take part.
As more and more children are given autism diagnoses each year and as more children become adults, it becomes increasingly important to understand autism spectrum disorders and to find ways to help. autismMatch will speed up the research process by quickly connecting researchers with families who can contribute their time, knowledge, and experience.
Confidentiality: All information obtained through autismMatch is kept private and confidential, consistent with federal standards. Your information and the information about your family, including your contact information, will never be shared with anyone without your consent.
Security Safeguards: Participant anonymity is protected at all times through information coding and encryption. Participants in autismMatch are assigned a unique identification number so that the identities of participants cannot be ascertained. Identification numbers are assigned using the National Database for Autism Research (NDAR), a biomedical informatics system created by the National Institutes of Health to assist autism researchers.
A community advisory board provides input to autismMatch regarding major strategic initiatives and eligible research studies. The board may be composed of up to 15 people who represent diverse backgrounds and communities. In particular, the following constituencies are represented:
A project review committee is convened as needed to review specific projects from researchers seeking to recruit families through autismMatch. This committee consists of key staff as well as at least one rotating member of the advisory board.