Building awareness of the value of brain tissue donation for autism research

  • Awarded: 2012
  • Award Type: Research
  • Award #: 260352

The goal of this project was to increase awareness of the need for brain tissue donation for autism research, and to thereby increase the number of people registered to donate and the number of actual donations. This project is the outreach program of Autism BrainNet.

Human tissue is the gold standard for research. Without access to the affected organ, we cannot answer the most basic questions about autism’s etiology and pathways. Only four to six postmortem autism brains are collected each year, due in most part to the autism community’s lack of awareness of the need for tissue.

As part of this project, Alison Singer and her colleagues at the Autism Science Foundation in New York City conducted surveys and held focus groups to understand the public’s beliefs and attitudes concerning postmortem brain tissue donation. Based on these data, they developed a new strategy for encouraging stakeholders and the general public to donate tissue. They created outreach materials including brochures, two websites, a video, a quarterly newsletter and two sets of printed materials for different target audiences. One set of print materials features a family with a child with autism; the second features a well-known adult with autism who is a self-advocate. In addition, they attended and participated in dozens of autism advocacy events to distribute the materials and encourage families to register to donate tissue.

The new campaign was launched in May 2014. From 15 May to 31 December 2014, there were 650 new brain tissue registrants vs. only 33 during that period in the previous year. That is a 2000 percent increase in registrations as a result of the new outreach campaign.

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