WASHINGTON, D.C. – The National Alliance for Autism Research (NAAR) and the National Institutes of Health (NIH) recently unveiled two innovative partnerships focusing on genetics and behavioral science that are designed to enable doctors for the first time to biologically diagnose autism and gain a detailed understanding of the cause of the disorder, which continues to elude the medical field.
The new public/private collaborations between NAAR and the NIH focus on building partnerships and research consortiums –a major theme of the recently announced NIH Roadmap Initiative for Medical Research. The
partnerships, which represent a joint commitment of at least $5.2 million, were announced at the opening session of the Autism Summit Conference on Nov. 19, highlighting the federal government's strategy to enhance research and service efforts.
“We are honored to partner with the NIH on these two innovative programs that represent our greatest hope for unlocking the mysteries of this devastating disorder,” said Prisca Chen Marvin, chair of NAAR's Board of Trustees and the parent of a child with autism. “By pooling the resources of the federal government and the autism community and working together, we increase our chances of creating significant breakthroughs in the next five to ten years that can improve the lives of families affected by autism.”
The first of the partnerships is the NAAR Autism Genome Project, the largest research collaboration ever assembled that seeks to determine the genes associated with autism spectrum disorders. The project involves four institutes partnering with NAAR: the National Institute of Mental Health (NIMH), National Institute of Child Health & Human Development (NICHD), National Institute of Neurological Disorders & Stroke (NINDS), and National Institute of Deafness and Other Communication Disorders (NIDCD). The institutes have collectively committed $2.5 million towards this project and NAAR, which began co-funding one of the largest autism genetics consortiums with the Nancy Lurie Marks Family Foundation in 2000, has committed $2 million.
“Unraveling the complex genetics of autism spectrum disorders will require the kind of statistical power afforded only by a pooling of DNA samples and data from ever larger numbers of affected families,” said NIMH Director Thomas R. Insel, M.D. “This ambitious task calls for the model embodied in our new collaboration with NAAR.”
Click here for more information on the NAAR Autism Genome Project.
The second partnership is the High Risk Baby Siblings Autism Research Project, which focuses on early diagnosis of autism spectrum disorders and identifying biological markers, and involves the NICHD. NAAR, which began funding baby sibling research in 1997, has committed $700,000 to the collaboration. Part of this commitment includes a $100,000 gift to NAAR from the Dan Marino Foundation.
“This partnership will enable us to move into this important area of research much faster than if we had to start it on our own, and to complete it sooner,” said Duane Alexander, M.D., director of the NICHD.
Click here for more information on the High Risk Baby Sibling Autism Research Project.
Andy Shih, Ph.D., director of Research & Programs at NAAR, said both partnerships are designed to further the medical community's understanding of autism in a way that has not been done before.
“These unprecedented projects have the potential to enable clinicians to biologically diagnose autism and definitively diagnose autism earlier than ever, which improves the prognosis of children and their families affected by autism,” said Dr. Shih. “Also, providing a definitive, biological diagnosis will make it easier for more parents to seek early intervention.”
While autism is largely considered one of the most heritable neurological disorders, the causes of autism are not known and there are no ways to biologically diagnose the disorder. Also, there are no specific medical treatments for autism and no cures for the disorder.
“Only when we understand what causes autism can we seriously begin to focus on biologically diagnosing the disorder, developing medical protocols that help children and adults effectively manage autism and, perhaps prevent it from happening in the first place,” said Dr. Shih. “Gaining a thorough understanding of the genetic underpinnings of autism may lead to a way to prevent some causes, especially if it is determined that autism is caused as the result of genetic and environmental factors.”
The collaborations are unique examples of how the federal government is working with a national parent-led organization to fund and advance research.
"NINDS has supported a collaborative genetics project in autism in the past and is delighted to contribute to this significantly expanded effort. This public/ private partnership should make it possible to move much more quickly to find answers to the genetic puzzle that autism presents," said Story C. Landis, Ph.D., Director of NINDS.
NAAR provided the initial support and infrastructure that fostered a collaborative atmosphere in both the "NAAR Autism Genome Project" and the "High Risk Baby Siblings Autism Research Project." The NIH has now brought its support and expertise to the partnerships, which has elevated each project to the next stage and illustrates how the public and private sector can work together to enhance investments in medical research.
Dr. Shih noted that the partnerships between NAAR and the NIH may pave the way for a broader understanding of behavioral science in general.
“Advanced knowledge on how genes control human behavior will likely further our understanding of human biology and the role genes play in developmental, language & communications and emotional disorders and other neurological conditions,” he said.
Autism is a complex brain disorder that often inhibits a person's ability to communicate, respond to surroundings or form relationships with others. First identified more than 50 years ago, autism is typically diagnosed by the age of two or three and considered a spectrum disorder because symptoms and severity vary from individual to individual. Most people with autism spectrum disorders require lifelong supervision and care and the most severely affected will never be able speak. Autism spectrum disorders affect people of all racial, ethnic and socioeconomic backgrounds and occur in an estimated one in every 250 births. Some studies place the prevalence even higher.
According to a poll conducted by NAAR earlier this year, a majority of Americans believe that autism research should be awarded a much higher priority and want both the government and the private sector to increase research funding to develop better methods to diagnose and treat autism and to find a cure for the disorder.