Advancing RBD Research Through Brain Donation
The Importance of Tissue Donation in Medical Research
Behind every medical breakthrough, there's meticulous research. In many cases, that research relies on organ donation, especially for complex organs like the brain. Donated brain tissue allows researchers to see if a specific neurological disorder is present and can help uncover the biological changes that lead to diseases like Parkinson's, dementia, and multiple system atrophy.
NAPS’ Role in Understanding RBD
At the North American Prodromal Synucleinopathy Consortium (NAPS), we are dedicated to studying these pathologies. Our focus is to understand the potential causes of REM sleep behavior disorder (RBD), a condition strongly linked to these diseases, and develop new treatments to delay or prevent the onset of symptoms. However, the structural changes caused by RBD can only be studied from donated tissue.
Arranging for Brain Donation
Arrangements to donate must be made well in advance, often months or years before passing. This ensures that patients can express their preferences and that the process is as smooth and respectful as possible. It is particularly important to arrange for an autopsy, a simple procedure similar to a surgical procedure. The pathologist will perform the brain tissue removal, collecting samples that can be used for numerous research studies. The body is then returned to the family with no visible signs that any procedure took place.
Changing Your Mind and How We Support You
Deciding to donate is not binding; you can change your mind at any time. At NAPS, we are committed to providing assistance and support as you navigate the process. We encourage you to discuss it with your doctor, family, and loved ones. If you have any questions, a NAPS team member will be happy to provide more information by phone or during your next study visit.
The Gift of Brain Donation
Brain donation is one of the most important and generous gifts a NAPS study volunteer and their family can give. Thank you for your contribution to advancing RBD research.
Contact Us
If NAPS study volunteers have any questions or would like to learn more about the brain donation process, please reach out to your local NAPS study team. We’re here to provide you with the support and information you need.
We look forward to assisting you and supporting you throughout this process.
