PRINCETON, NJ – A new web-based genetics education tool for parents and family members of individuals with autism that was funded by the National Alliance for Autism Research (NAAR) has recently been unveiled to the general public.
The website, www.exploringautism.org, is designed to promote genomic literacy among families with a history of autism spectrum disorders so they better understand the genetic components of autism, the latest genetic research advances and the potential implications of those advances. The website is dedicated to helping families who are living with the challenges of autism stay informed about breakthroughs involving the genetics of autism. Coordinated by the Center for Human Genetics at Duke University Medical Center in Durham, N.C. and Tufts University/New England Medical Center in Boston, MA, the website is the first project of its kind funded by NAAR.
"This new website is truly a unique resource providing accurate and easy to understand information that explains the latest information on autism spectrum disorders, genetic research findings in autism and genetic principles as they relate to autism spectrum disorders," said Andy Shih, Ph.D., director of Research & Programs at NAAR.
The website's architecture allows visitors users to navigate the site easily and locate useful information, read current news on autism-related genetics and take part in an online survey designed to help researchers evaluate the genetic educational needs of families and other people who visit the site.
"There is not just data at this website, but useable information that benefit both family members of people with autism and healthcare professionals looking for the latest, most accurate information on the genetics of autism," said Dr. Shih.
The website is organized by the following key sections:
- What is Autism – Provides an overall description of the autism spectrum disorders, including diagnosis information and genetic conditions associated with autism.
- Genetics Overview – Features a glossary of terms used in genetics and an explanation of tools used to help researchers locate susceptibility genes and information on recent investigations on certain chromosomes.
- History of Autism – Includes a timeline of important advances in autism diagnosis and autism research as well as genetics.
- Autism & Environmental Factors – Explores the theory of complex inheritance and the possible relationship between the environment and autism spectrum disorders.
- Family Stories – Shares the story of the Flores family, of Raleigh, NC, which has two children with autism.
- Frequently Asked Questions – Lists questions and answers on autism and inheritance, what genes are involved in autism spectrum disorders, and ongoing genetic autism studies.
- Survey – Online survey open to all users that is being used to help the Autism Genetics Collaborative determine the educational needs of families and develop additional educational materials.
NAAR funded the website through a $41,912 grant in awarded in 2001 to Margaret A. Pericak-Vance, Ph.D., Center for Human Genetics at Duke University Medical Center; and Susan Folstein, M.D, Department of Psychiatry, Tufts University/New England Medical University. Dr. Pericak-Vance and Dr. Folstein serve as editors of the website, along with Beth Rosen-Sheidley, M.S., CGC, New England Medical Center; and Chantelle Wolpert, MBA, PA-C, Duke University Medical Center. Information on the website is evaluated by the Autism Genetics Cooperative, an advisory board made up of researchers from major universities and medical centers.
"We are excited to see this collaborative educational initiative come to life on the Internet, and feel we are helping to provide a dynamic, new resource for families and healthcare professionals," said Prisca Chen Marvin, Esq., president of NAAR's Board of Trustees.