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The Autism Speaks Participant’s Guide to Autism Drug Research

April 10, 2012

Autism Speaks is pleased to announce the publication of A Participant’s Guide to Autism Drug Research, written under the guidance of child psychiatrist Joe Horrigan, M.D., Autism Speaks assistant vice president and head of medical research. The guide is available for free download from the Autism Speaks website.

“It’s exciting to see better medicines being developed for those with autism spectrum disorders,” Dr. Horrigan says. “But this brings with it a special responsibility to educate and safeguard families who are interested in trying experimental treatments, because the role of a research participant is different in several important ways from the role of a patient.”

Medicines for treating autism’s three core symptoms – communication difficulties, social challenges and repetitive behavior – have long represented a huge area of unmet need. In fact, while the Food and Drug Administration (FDA) has approved two medicines for treating irritability associated with the autism (risperidone and aripiprazole), it has yet to approve a medicine for treating autism’s three core characteristics.

The good news is that the range of medication options may improve in the years ahead, thanks to recent advances in our understanding of the biology that produces autism’s core symptoms. This has made it possible for researchers to begin testing compounds that hold promise for normalizing the brain functions involved in autism. Early experiments suggest that several compounds with different mechanisms of action have great potential for clinical use, and some are now in clinical trials.

The decision to participate in drug research is an important one, all the more so if you are making this decision for your child or other dependent, Dr. Horrigan comments. The goal of Autism Speaks’ Participant’s Guide to Autism Drug Research is to answer common questions and pose others that may be important for you to consider, such as:

  • What is clinical drug research?
  • Why participate in clinical drug research?
  • How is participating in research different from seeing a doctor?
  • What do researchers mean by clinical trial phases?
  • What questions should I ask the researcher?
  • What rights do all participants have?
  • What rights do children have when participating in research?     

“Autism Speaks is committed to safely advancing the development of better medicines for individuals with ASD, and to assuring that these individuals are provided with appropriate safeguards when making the important choice to become a research participant,” Dr. Horrigan says.

To find out about clinical trials that may be seeking volunteers in your area, click here or on the green “Participate in Research” button at the top of this page. Like all Autism Speaks resources for families, the Participant’s Guide is made possible by the support from our donors and volunteers.

For more information on Autism Speaks’ proactive role in guiding and advancing the field of autism medicine development, please see today's related blog post on its participation in European Autism Interventions – A Multicentre Study for Developing New Medications (EU-AIMS), a five-year project to create the technical tools and research networks needed to responsibly and effectively test experimental autism medicines in children and adults.