The PREDICT-HD study is part of a worldwide continuing effort to understand, treat and cure Huntington's disease. While our research has greatly expanded our knowledge of Huntington's disease, the analysis of brain tissue donated by those who have the HD gene expansion may provide crucial to our understanding as we work toward a cure. Therefore, we see brain donation as a gift of hope for generations to come.
Most world religions recognize and support the concept of brain donation because the information gained has the potential to greatly improve the quality of life for those at risk for inheriting a genetic disease. Please feel free to discuss this topic with your personal religious advisor.
Decisions regarding brain and other tissue donation are often left to the family for a variety of reasons. We want you (our study participants) to be aware that these decisions are yours to make. You may wish to discuss this topic further before you decide.
If you are not already registered as a brain donor, we encourage you to inquire about registering at your next PREDICT-HD study visit. Your coordinator will be able to fully inform you about the registration process.
We are partnering with the New York Brain Bank at Columbia University to collect donated brain tissues. Click here to visit the New York Brain Bank website.
Why are we collecting CSF?
Frequently asked questions about PREDICT-HD brain donation
Q: Can you have an open casket funeral if you donate your brain?
A: Yes. Brain removal does not cause disfigurement and does not interfere with funeral arrangements or viewing of the deceased. This is a common procedure and the incisions are fully compatible with currently accepted procedures used by funeral directors and morticians.
Q: Is brain tissue donation the same as other organ donation?
A: Not exactly. When someone dies, the brain tissue needs to be donated within 12 hours for it to be useful to researchers. The brain can't be kept alive with machines the way the heart can for donation. And brain tissue isn't used for a transplant like the heart or kidney – its tissue is for research only.
Q: I am identified as an organ donor on my driver's license. Is this sufficient to ensure that my brain will be donated for research?
A: No. Organ donation preference status on an ID card is about donating organs for transplant, not for medical science. You will need to register with PREDICT-HD if you wish your brain tissue to be donated for this research.
Q: If I register to donate my brain for HD research, is that all I need to do to ensure my brain will be properly donated to PREDICT-HD?
A: No. You should discuss your wishes to donate your brain tissue with your family, especially your next of kin. Your family will be responsible for calling PREDICT-HD upon your passing, and PREDICT-HD will take care of arranging the donation.
Q: Will there be any cost to my family for the brain donation?
A: No. All costs are covered by PREDICT-HD.
More questions? Please contact Amanda Miller, LMSW, at (319) 335-6640.
Sources: UW/VA Madison Brain Bank; About.com.