The Autism Consortium’s mission is to catalyze rapid advances in understanding, diagnosis and treatment of ASD by fostering collaboration among a growing community of clinicians, researchers, donors and families to improve the care and treatment of people affected by autism and other neurological disorders.
In the eight years since we started, and we are pleased and proud to have made progress in building and maintaining a community dedicated to advancing research in autism.
Our progress has been made possible by the incredible commitment of funders who view collaboration as the key to leveraging the collective strength of our member institutions and all the dedicated professionals who are working to increase understanding in this complex field. We extend our heartfelt thanks to these funders, for their belief in the mission and support for the work.
Support multi-disciplinary and multi-institutional collaboration
- Provide a framework for regular meetings and discussion among groups of scientists and clinicians who come together to discuss their work in autism, share knowledge and ideas to improve care and treatment, and plan for new research. Most importantly, the Consortium supports collaborations across institutions and disciplines. As a result, many new scientists have been attracted to the field to apply their expertise to the complex challenges of understanding Autism Spectrum Disorders.
- Other regions of the country are replicating our Consortium, notably the Southeast and San Fransisco Bay area, to create the same dynamism of intellectual collaboration.
- Our digital strategy, including the Consortium’s re-engineered website offers scientists and clinicians a venue for listing their labs with current projects, and live links, in order to build awareness of important on-going work among our membership and beyond.
Family Support Program
- Establish a network of five hospital sites where autism clinics are working hard to meet the needs of the increasing number of families facing a diagnosis. These include: Children’s Hospital Boston, the Lurie Center for Autism (MGH), The Floating Hospital for Children at Tufts Medical Center, Boston Medical Center and UMass Medical Center.
- Create and fund a team of Autism Resource Specialists in each of the five clinics. These positions facilitate delivery of a higher quality of care, allow clinicians to see more patients, and help reduce waiting lists. To date, the team has helped nearly 9,000 families take the critical next steps after diagnosis by connecting them with needed resources.
- Curate a wealth of autism resources tailored to meet their needs, including a comprehensive Parent Information Packet, translated into six languages; access to a searchable on-line Resource database where they can identify services throughout the state; and access to an online calendar of events including workshops and conferences.
- Develop a very successful parent education series for underserved and minority populations entitled, Everyday Behaviors and Solutions which is coordinated by our Autism Resource Specialists with our affiliated clinics and community partners.
- Create and publish a deeply needed resource manual titled, Transitioning Teens with Autism Spectrum Disorders: Resources and Timeline Planning for Adult Living.
- On behalf of their patients, our clinicians collaborate across their institutions and work with many other groups to successfully advocate for enactment of an insurance mandate to require insurance coverage for autism diagnosis and treatment in Massachusetts.
- All of our resources are available on the Consortium website (http://www.autismconsortium.org) so that we may serve many more families than those who are helped directly in the clinics.
Create collaborative research opportunities involving families as partners
- Establishment of a coordinated team of genetic counselors within each hospital/clinical site to work with clinicians and families to enhance participation in research studies. We establish a steadfast presence at autism community events in order to recruit and widely convey the message about the importance of being involved in research. Last, we regularly use our networks and the Consortium’s website to make research opportunities known to the community. Our new expanded website includes a marketplace of research where families may directly connect to studies to consider enrollment.
- Over 925 families recruited and enrolled in our two studies in less than four years. Many of these families have agreed to be re-contacted for future studies.
- Our first study, which included over 500 local families, established a new standard of care for genetic testing for autism. The study demonstrates that for patients with autism spectrum disorders, chromosomal microarray analysis (CMA) is better able to identify genetic abnormalities than other clinically available genetic tests, and therefore should be part of the initial evaluation for patients with ASDs. These results are published in the journal Pediatrics March 2010, volume 125.
- A second study was initiated to increase understanding of the many subtypes of autism, by collecting biological samples and extensive phenotype data on affected individuals and families. In three years, teams at Massachusetts General Hospital and Children’s Hospital Boston collected extensive phenotype information on over 500 families. Families were provided an extensive feedback report for their use in individual education planning and for working with neuropsychologists and other medical professionals.
Contribute to cross institutional research
- Working collaboratively, researchers identified several genetic mutations associated with autism spectrum disorders. In 2008, they identified a missing or duplicated piece of chromosome 16 containing 25 genes, a chromosome not previously associated with ASDs. The micro-deletion/duplication in chromosome 16 makes an individual 100 times more likely to have an ASD.
- Building on the genetic finding on chromosome 16, researchers are continuing to elucidate the role of the 25 genes in the 16p11.2 region in autism spectrum disorders.
- Scientists with expertise in neuroimaging design and execute a first-of-its-kind multimodal imaging study using fMRI, ERP and MEG at three collaborating institutions: MIT, Children’s Hospital Boston and Massachusetts General Hospital. The results of this study will contribute to understanding the underlying neurological causes of autism.
- Several researchers are involved in the development of new treatments for Autism Spectrum Disorders that are in clinical trials. These include therapeutics for Fragile X, Rett Syndrome and Tuberous Sclerosis Complex.
Establish a collection of data and samples and create the tools to use them
- We established a local repository of over 1,500 biological samples and associated phenotype data to encourage and facilitate research among all Consortium members. These data and samples were contributed to the national repository of biological samples and data at the NIMH. Sharing these samples also facilitates research in the broader autism research community.
- We created informatics tools to track the biological samples and associated phenotype data, and fund a database manager to facilitate researcher requests. A new ontology, incorporated in the data warehouse, is enhancing cross-disciplinary research and data exchange, and provide new opportunities for data analysis.
Contribution to developing therapeutics
- Our 2010 Symposium kicked off this initiative with a talk by Robert Ring, PhD of Pfizer (now Vice President of Translational Research at Autism Speaks) and included a roundtable discussion among the Consortium Board and pharmaceutical company representatives.
- We continue to participate in meetings that seek to establish precompetitive collaborations and set priorities toward impacting autism, establishing consensus on clinical targets, and identifying key biomarkers. Through these meetings we also hope to better clarify the regulatory process and explore best practices in clinical trials that can be applied to autism.