Cure Autism Now and AGRE Continue to Pave the Way for Autism Research

October 14, 2007

As reported in the media this week, the National Alliance for Autism Research (NAAR) launched the Autism Genome Project (AGP). This initiative brings together nine independent research groups, including Cure Autism Now's own Autism Genetic Resource Exchange (AGRE), to perform large-scale analyses that will identify autism susceptibility genes. Cure Autism Now is very excited to be a part of this program and what it represents to autism research. NAAR's contribution of $2 million will allow researchers to conduct the largest autism genome scan to date. In addition, AGRE will be providing over one-third of the samples used in this analysis, which represents a contribution by the Cure Autism Now Foundation of approximately $6 million to the effort. Over the years, Cure Autism Now, the National Institute of Mental Health (NIMH), and other research organizations have spent tens of millions of dollars to fund many of the researchers involved in this collaborative project.

AGRE's pioneering efforts, which started in 1997, laid the groundwork for the level of data sharing and analysis proposed by the AGP. The decision for AGRE to participate in this initiative was made after great deliberation since the AGP did not initially support the same standards on broad data sharing and dissemination that have set AGRE apart since its inception. The AGRE Scientific Steering Committee decided that there was great value in bringing so many researchers and multiple sample sets together. In addition, Cure Autism Now was instrumental in securing federal funds that would allow researchers to go back to the families in their individual collections and obtain their consent for use of their data and biomaterials in subsequent analyses, a process also known as reconsenting.

Over the past eight years, AGRE has registered more than 1,000 families in the research program. We are proud to make biomaterials and research data for over 500 families immediately available to the entire scientific community. Thanks to our AGRE families, more than 130 researchers have accessed the AGRE collection, publishing more than 30 papers in peer-reviewed scientific journals, nine in 2004 alone. The NIMH saw the unique value of this resource and recently made a five-year, $4 million commitment to support AGRE's work.

Clara Lajonchere, Ph.D., our AGRE Program Director, reports that the program has served as the foundation for two full genome scans-- the largest performed by Dan Geschwind, M.D., Ph.D. and colleagues at UCLA in 2003 using 345 AGRE families. Furthermore, Dr. Geschwind, who is also the Chief Scientific Director for AGRE, was awarded a grant from the Center for Inherited Disease Research (CIDR) that provided genotyping for many of the AGRE samples using the latest technology. Genetic fine mapping of regions of interest is being carried out on the AGRE collection by Illumina, Inc, a biotech company in San Diego. Dr. Geschwind and collaborators are also working with Perlegen Sciences, Inc., to perform a whole genome scan using a patented gene chip technology that will identify narrow regions of the genome that might increase susceptibility to autism.

At the end of its first eight years, the AGRE program continues to be the gold standard for autism genetic research. Thanks to our family partners, we are able to report that our research efforts and increased funding have made AGRE the largest collaborative gene bank for autism in the world. We now have twice the number of registered researchers as in previous years representing 17 countries worldwide.

The success of the AGP depends in large part on the AGRE families who will contribute over one-third of the samples to this collaborative effort, making AGRE the largest contributor to this project. We expect this collaboration to expand our knowledge about the causes of autism and we call on the AGP to make the raw data from the study available immediately to the scientific community, rather than keeping the data private for a year or more after collection.

As you know, one of the most important aspects of our AGRE program is our ongoing collaborative effort to support the work of researchers in the U.S and abroad. This includes our work with Stanford University's Twin Study, UCLA's Imaging Study, The Southwest Autism Research and Resource Center, Washington University in St. Louis, Lipomics Inc., and the AGP.

AGRE has been a major pioneer in broad data sharing and collaboration. The AGP represents the tireless work of Cure Autism Now and AGRE, both of which are committed to supporting research programs that will bring us closer to the cure. We will continue to keep you updated about our AGRE program in the coming months.