Autism BrainNet and NIH NeuroBioBank partner to advance autism research

Simons Foundation and Autism Speaks have entered into an agreement with the National Institutes of Health to align two of the world’s largest repositories of donated postmortem brain tissue for medical research: Autism BrainNet and the NIH NeuroBioBank.

The partnership will produce a unified resource for neurological research by aligning the procedures that the two repositories use to collect, prepare and preserve the field’s most precious and limited resource – the human brain. The agreement will also establish shared standards and strict criteria that researchers must meet to obtain tissue from the two brain banks.

“The collaboration between the NIH NeuroBioBank and Autism BrainNet is a key step in developing the necessary resources to understand and treat autism spectrum disorder,” says NIH NeuroBioBank project officer Michelle Freund.

“This collaboration will send a clear message to the autism community that a unified, national approach is underway to collect a critical number of brain donations for autism research,” adds Autism BrainNet Director David Amaral. “We aim to achieve this goal as quickly as possible in order to facilitate research into autism’s causes, with the ultimate goal of developing more effective treatments to decrease disability and increase quality of life.”

In recent years, human genetic sequencing, animal research and other approaches have led to significant advances in our understanding of autism spectrum disorder. However, many avenues of autism research have been hampered by the extreme lack of direct access to human brain tissue. Unified procedures in how donated brain tissue is collected, prepared and stored is vital for avoiding discrepancies in their analysis.

“Postmortem brain tissue is essential to understanding how genetic and environmental factors influence the human brain.”

“Postmortem brain tissue is essential to understanding how genetic and environmental factors influence the human brain,” says Marta Benedetti, senior scientist at SFARI. “This unprecedented public-private collaboration will catalyze discovery of new mechanisms implicated in the development of autism spectrum disorder at the level of gene expression, cells and circuits – which are not accessible to current imaging technology. It will also allow for the much-needed replication of published findings.”

Adds Daniel Smith, Autism Speaks’ vice president for innovation technologies: “This important partnership arms autism researchers with a higher quality resource to study the underpinnings of autism. Joining forces to standardize our brain banking procedures is an investment in serving our community members with the most meaningful research possible.”

The Simons Foundation and Autism Speaks created Autism BrainNet in 2014, building on the Autism Tissue Program created in 1988 by the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), two of the legacy organizations that became Autism Speaks.

The NIH NeuroBioBank is a program of the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Like Autism BrainNet, it facilitates the collection and distribution of human post-mortem brain tissue for a broad range of neurological research. It does so in collaboration with tissue repositories, health advocacy groups, and individuals interested in post-mortem brain donation – in order to advance research on neurological conditions.

Autism BrainNet depends on postmortem donations from individuals and families affected by autism spectrum disorder. Many families have found great meaning in making this donation.

Learn more about becoming a donor at


** See also the related NIH announcement “NIH-supported NeuroBioBank joins Autism BrainNet in brain donation initiative

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