|Project Title||Principal Investigator||Institution|
|Enhanced tissue procurement from autistic indivdiuals||Zielke, H.Ronald||NICHD (National Institute of Child Health & Human Development) Brain and Tissue Bank for Developmental Disorders, University of Maryland|
|IACC Strategic Plan Objective||2008||2009||2010||2011||2012||Total|
|Identify ways to increase awareness among the autism spectrum community of the potential value of brain and tissue donation to further basic research by 2011. |
IACC Recommended Budget: $1,400,000 over 2 years
|2.S.C. Funding: The recommended budget was partially met. |
Progress: Loss of autism brain samples due to a freezer malfunction at a major brain bank in 2012 has caused a loss of progress in ASD research. Thus, there is a need for new samples to replace those that were lost and to begin expanding the amount of brain tissue available for ASD research. The Autism BrainNet initiative is a multi-site, privately funded effort that will target autism specifically and will include an autism-specific brain donation outreach campaign that addresses this objective. NIH launched the NIH Neurobiobank ($5 million), which includes samples for research on autism as well as other brain disorders, and has an associated online publication "Why Brain Donation? A Legacy of Hope" to increase awareness about brain donation. Both of these initiatives are not yet reflected in the Portfolio Analysis, because they began in 2013. In addition to these new brain banking efforts, the NICHD Brain and Tissue Bank produced a video for their website to generally increase awareness the potential value of brain and tissue donation to further basic research on neurodevelopmental and pediatric conditions. Since the effort is not autism-specific, it was not captured in the portfolio analysis.
Remaining Gaps, Needs and Opportunities: There is an ongoing and urgent need to raise awareness of the importance of brain and tissue donation for research, to standardize the methodology of collection and to increase the supply of such tissues. Autism BrainNet, a private outreach and postmortem brain donation program dedicated to research on autism and related disorders will integrate the Autism Tissue Program (ATP) with collection sites at Mount Sinai School of Medicine, the University of Texas Southwestern Medical School, and the University of California, Davis MIND Institute.