The Transition to Autism BrainNet: Your Questions Answered

Friday, June 20, 2014 View Comments

“Congrats on the launch of Autism BrainNet. Will Autism Speaks remain involved in brain tissue donation? What will happen with the donations and registrations that went into its Autism Tissue Program?”

Today’s “Got Questions?” answer is from Autism BrainNet Science Program Officer Jane Pickett. During this transition period, Dr. Pickett continues to serve as director of the Autism Speaks Autism Tissue Program, which became a core part of Autism BrainNet.

Thanks for your question. As you may have read on our website and elsewhere, Autism Speaks and the Simons Foundation have established a new network to advance autism research through the precious gift of postmortem brain donation. BrainNet grew directly out of the Autism Speaks Autism Tissue Program (ATP). It’s a multi-site brain bank network for acquiring, preparing, storing and distributing brain tissue to qualified researchers. Our goal, as always, is to advance our understanding of the biological basis of autism and develop effective treatments for those who need them.

Autism BrainNet represents the culmination of a collaboration that has involved key experts in the field of brain banking. With more than $7.5 million in funding over the next five years, this collaboration will be game changing. It has the potential to advance the field of autism brain research in ways not previously possible. 

We have now moved the ATP’s functions to the new Autism BrainNet website. And we’ve launched a new tissue-registration site – “It Takes Brains.” We hope you’ll visit both for a wealth of information.

Meanwhile, here are specific answers to your questions and to some related questions we’ve received:

* Does the ATP still exist?   As a legacy program, the Autism Speaks Autism Tissue Program is now a core part of Autism BrainNet. 

* Is Autism Speaks still involved in brain banking? Absolutely! In partnership with the Simons Foundation, Autism Speaks continues to actively support brain tissue donation and distribution through Autism BrainNet.

* What has happened with all the donations already made to ATP? All ATP donor tissue and clinical records are now part of the Autism BrainNet, where they will retain a clear identification that they were made through the ATP. We know this is important to many of our registered families and long-time supporters.

* If I registered as a donor with ATP, what happens to my information? Your registration has become part of the new Autism BrainNet registry. As always, you have the option of opting out of the registry. (Contact us at info@AutismBrainNet.org.)

* Has our memorial to our family member been transferred to the Autism BrainNet site?  We are in the process of making this transition and will notify all next-of-kin when it is complete. You can also contact us if you wish to post a new memorial: info@AutismBrainNet.org or toll-free 877-333-0999.

* Is the donation hotline the same? Yes, we’ve kept the toll free number: 877-333-0999. We’re here and ready to help 24 hours a day.

* I want to register; where do I go?  We hoped you’d ask. Here’s the registration website again:  http://www.takesbrains.org/

* As a researcher, where do I go now to apply for tissue? Please visit our researcher information page: http://www.autismbrainnet.com/researchers/

* What ultimately happened following the tragic tissue freezer failure at Harvard two years ago? Autism Speaks arranged for independent testing of all involved samples. The good news is that some undamaged genetic material may still be useful for research.  

* More questions? Contact us any time at info@autismbrainnet.org or 877-333-0999. 

A Special thanks to Autism Speaks ATP families
Autism Speaks’ ATP was the largest program solely dedicated to increasing and enhancing the availability of brain tissue to as many qualified autism researchers as possible. We thank all the families who generously donated tissue over the past 15 years. Welcome to our Autism BrainNet family.