NIMH signs agreement to establish collaborative brain donation initiative for autism research

The National Institute of Mental Health (NIMH) has signed an agreement to establish a collaborative, nationwide effort for the collection, storage, and distribution of postmortem human brain tissue for the benefit of autism research. The agreement with Foundation Associates LLC will coordinate the efforts of two independent networks of human brain tissue repositories, the National Institutes of Health (NIH) NeuroBioBank (NBB) and the Autism BrainNet (ABN).

The pace of research is dependent on the availability of high-quality brain tissue, and the need for donor tissue from individuals both with and without an autism spectrum disorder (ASD) has never been greater. This collaboration will leverage the advantages of public and private efforts to collect vital brain specimens to advance our understanding of ASD and related disorders.

Since its 2013 launch, the NIH NBB has increased the quality and quantity of human brain tissue available for neurological, neurodevelopmental, and psychiatric research. Multiple brain tissue repositories in the NIH NBB network, located in academic research sites across the country, have accomplished this feat by working in unison to raise public awareness of brain donation and its benefits to human brain disease research.

Now, the NIH NBB and ABN--a consortium of academic research sites that collect, store, and distribute tissue specifically for ASD research--will jointly redouble their efforts to ensure best practices around the collection and distribution of these precious resources. The ABN initiative is directed by David Amaral, Ph.D., research director of the MIND Institute at the University of California, Davis, and supported by Autism Speaks and the Simons Foundation Autism Research Initiative.

"One of the best ways for us to fully understand the molecular and cellular characteristics associated with the development and progression of ASD is to study brain tissue from individuals with ASD," said NIMH Acting Director Bruce Cuthbert, Ph.D. "This unified effort will allow researchers to generate new data, which will enhance our understanding of this disorder and ultimately speed progress toward new and personalized interventions for individuals across the autism spectrum."

A key aspect of the collaboration involves developing standardized brain donation protocols for use by personnel at tissue collection and research sites across the United States. These include procedures for obtaining consent, ensuring privacy protection, processing and maintaining donor tissue, and collecting donors' clinical, medical, and education records.

Both the NIH NBB and the ABN will maintain a catalog of all available samples and data from both repositories and enforce fair tissue distribution rules. NIMH and Foundation Associates anticipate that this joint effort will facilitate the distribution of high quality human brain tissue to ASD researchers worldwide.