The Simons Foundation Autism Research Initiative (SFARI) is pleased to announce that Autism BrainNet is beginning to distribute new frozen and fixed postmortem brain tissue from individuals with autism spectrum disorder (ASD) and related neurodevelopmental disorders, as well as neurotypical individuals.
To date, the Autism BrainNet collection has received 146 brain donations. This includes 55 brains from individuals with a confirmed or suspected diagnosis of ASD, 17 brains from individuals with conditions related to ASD, such as epilepsy or other neurodevelopmental disorders, and 74 brains from individuals with no known psychiatric or neurological conditions.
Autism BrainNet was established in 2014 with the goal of collecting postmortem brain tissue to promote research on the causes and potential treatments of ASD and other related neurodevelopmental disorders. An initiative of Foundation Associates LLC, which was formed by the Simons Foundation and Autism Speaks, Autism BrainNet is now entirely funded by SFARI. As part of its prior legacy with Autism Speaks, Autism BrainNet also manages tissue that had been previously collected by Autism Speaks’ Autism Tissue Program (ATP). While ATP tissue has already been released to the research community, Autism BrainNet tissue will now be distributed for the first time.
“Autism BrainNet is very grateful to all the families who decided to make a donation. We deeply appreciate their gift to science at such a difficult time of their lives. We are committed to building a strong partnership between families and researchers to advance the knowledge of autism together,” says David Amaral, director of Autism BrainNet and professor at the University of California, Davis.
Frozen tissue is available from 41 ASD cases with a confirmed diagnosis, including 30 donations from Autism BrainNet and 11 brains collected by ATP, with limited previous distribution. Frozen tissue from 62 control brains and 11 cases with autism-related neurodevelopmental disorders is also available.
Fixed tissue is available from 49 ASD cases with a confirmed diagnosis, including 38 donations made to Autism BrainNet and 11 brains collected by ATP. Fixed tissue from 74 control brains and 17 other neurodevelopmental disorders is also available.
All cases from individuals with ASD are confirmed via postmortem Autism Diagnostic Interview-Revised (ADI-R) or through record review before they are released to the research community. The ages for the ASD cases range from 2 to 91 years, with the largest number of cases in the 11–40-year-old range. More information about the available tissue, tissue characteristics (e.g., age of individual, postmortem interval [PMI], RNA Integrity Number [RIN], donor diagnostic data) can be found in the Autism BrainNet tissue catalogue. Additional phenotypic information is available to approved tissue recipients.
Whole-genome sequencing is being carried out on most of the ASD cases. Autism BrainNet plans to make these data available to approved investigators.
The tissue catalogue will be updated as new diagnoses are confirmed and donations are received.
Researchers from all over the world who are interested in studying ASD and related neurodevelopmental disorders are eligible to apply. All applicants must hold a Ph.D., M.D. or equivalent degree and have a faculty position or the equivalent at a college, university, medical school or other research facility.
All applicants must submit a short research proposal and demonstrate that they have adequate funding to carry out the proposed project using Autism BrainNet tissue. The form to submit a Tissue Request proposal can be found here.
Prior to finalizing their tissue request, and in order to streamline the request review process, researchers are strongly advised to contact email@example.com to confirm that the parameters of their request are appropriate.
All tissue applications will be peer reviewed by the Autism BrainNet Scientific Review Committee. Autism BrainNet leadership will work with investigators to determine necessary types and amounts of tissue to complete the proposed projects. Approved requests will be fulfilled by Autism BrainNet staff. The Scientific Review Committee meets a minimum of four times per year. The time between approval of an application and receipt of tissue is estimated to be at least six weeks and will depend on the brain regions, as well as the number of samples requested.
“Autism BrainNet will make every effort to provide tissue to the greatest number of qualified researchers from the limited cases available,” says Marta Benedetti, SFARI senior scientist and president of Foundation Associates LLC, which supports Autism BrainNet. “We are committed to communicating the need for brain donations to accelerate research on the underlying causes of autism and to developing effective strategies to distribute tissue of the highest quality. We anticipate that projects will use the tissue to explore questions at all levels of investigation, from genetics through molecular to anatomical.”
More information about the tissue-request process and review can be found here.