IAN Co-Founder Named to PCORnet Executive Committee
Dr. J. Kiely Law, co-founder of the Interactive Autism Network (IAN), has been named to the executive committee of PCORnet, the National Patient-Centered Clinical Research Network. PCORnet strives to improve clinical research by involving patients directly in the development and execution of research.
Kiely Law, MD, MPH, is research director of IAN and herself an "autism mom." After her son was diagnosed with autism in 1996, she learned first-hand the value of patient participation in autism research and care.
Her son's diagnosis "forever changed my life," she recalled. "At the time, I was a first year medical student and naively, I believed that the information needed to help Isaac would come from the medical journals and clinical experts around me. I was dismayed and heartbroken to learn that the medical community had very little to offer our family. In desperation, I joined a small parent support group. It was there that I found the answers I needed to help my son. The other parents had real-world experience and knowledge about autism. It was during this time that I first began to realize the power and importance of the patient/caregiver perspective in advancing medical research and clinical care. In 2006, I co-founded the Interactive Autism Network (IAN) to bridge the gap between families and researchers in the autism community. Over the last decade, IAN has engaged 57,000 participants in research and contributed to more than 500 autism research studies."
Dr. Law joins two other new committee members. They are Dr. Kathleen McTigue, associate professor of medicine and epidemiology at the University of Pittsburgh and a general internist, and Dr. Elizabeth Shenkman, chair of the Department of Health Outcomes and Policy, and director of the OneFlorida Clinical Research Consortium. Dr. Russell Rothman, director of the Vanderbilt Center for Health Services Research, was appointed committee chair.
For more information, visit PCORnet's website.