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The Boston Globe

Health & wellness

Groups creating autism brain bank

Autism advocates and scientists are collaborating to form a national network for collecting brain samples of recently ­deceased people with the condition, relatives, others, and several participants are set to ­announce Thursday.

The network, to be called Autism BrainNet, will help ­researchers recover from the loss of dozens of brain samples when a freezer malfunctioned last year at a McLean Hospital brain bank in Belmont.

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Samples collected by the network, which will solicit, process, and store brain samples donated by families, will allow scientists to compare the brains of people with and without ­autism in hopes of better under­standing a condition that affects up to 1 in 50 school-age children, according to government estimates.

Last summer, a freezer ­defrosted at the Harvard Medical School-affiliated McLean, destroying 54 autism brain samples, nearly one-third of the world’s largest collection. The remaining samples from that collection, run by the research and advocacy group Autism Speaks, will become part of the new network.

Although the effort to build a national network began ­before last summer’s accident, the loss motivated the group, said Robert Ring, vice president of translational research for ­Autism Speaks.

“I think that event really did more to engender a sense of ­urgency than it did anything else,” he said. But of course, “there’s no way we could ignore what happened at McLean in designing this network. Are we going to incorporate the learnings of those events in terms of how we think about storage? Absolutely.”

Ring said McLean followed standard protocol for brain sample storage and he does not blame the hospital for the malfunction, which he described as a “perfect storm,” with three alarms failing to sound.

“What remains there is going to be the foundation on which the new network is built,” he said.

It is not yet clear whether any of the newly collected brains will be stored at McLean, Ring said. A spokeswoman for McLean said Wednesday that she had not been informed about the network.

The Autism BrainNet, being announced at an autism conference in Spain, will be run at the MIND Institute at the University of California Davis and be led by its director, David Amaral.

Autism Speaks will contribute $2.5 million over the next five years and its brain collection, known as the Autism Tissue Program.

Another autism organization, the Simons Foundation, has promised $5 million over five years to the effort. Mount Sinai School of Medicine in New York and the University of Texas at Southwestern Medical School are the other BrainNet founding members.

By having partners across the country, the group “put ourselves geographically in a better position to increase the probability of successful donations,” Ring said.

BrainNet will reach a wider range of people, he said, boosting awareness of the need for brain donations. To sign up to be a brain donor, go to
www.autismtissueprogram.org.

Karen Weintraub can
be reached at Karen@
KarenWeintraub.com
. Follow her on Twitter @kweintraub.

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