About RLS
Donating Your Brain to RLS Research
Brain Bank Tissue Collection History
Research over the past decade has shown that the study of human brain tissue is essential to increase our understanding of how the nervous system functions. Most recently, postmortem human brain research played a significant role in the development of a genetic test for Huntington’s disease and a treatment for Parkinson’s disease. Studies that focus on RLS have been delayed because of the lack of both an appropriate repository and tissue donors.
The Restless Legs Syndrome Foundation remedied the latter by establishing the RLS Foundation Brain Bank at the Harvard Brain Tissue Resource Center in 2000. A part of the Harvard University medical system, the Center (housed at McLean Hospital and commonly referred to as The Brain Bank) began in 1978 as a centralized resource for the collection and distribution of human brain specimens for research and diagnostic studies. Over the years, hundreds of scientists from the nation’s top research and medical centers have requested tissue from The Brain Bank for their investigations. Because most of these studies can be carried out on a very small amount of tissue, each donated brain provides a large number of samples for many researchers. For comparative purposes, brain tissue is needed from healthy individuals, as well as from those who had RLS. When possible, a small portion of frozen tissue taken from each brain donated to the RLS Foundation Collection will be kept available to serve as a resource for future genetic testing.
Brain Bank Tissue Donation Process
The process of donating your brain to RLS research is broken down into 5 steps. To view more about these steps, please read our Process Steps in RLS Brain Tissue Collection.
Brain Bank Frequently Asked Questions
Below are some of the most frequently asked questions about this program. You can also read our 2008 Brain Bank Update for recent advances in the program.
How do I become a donor?
Becoming a donor is quite easy.
- First, you must register with the RLS Foundation and complete the necessary paperwork.
- After your registration is complete and returned to the RLS Foundation office, you may be asked to participate in a telephone survey to verify your diagnosis and severity levels.
- At the time of you death, your next-of-kin must be available and willing to authorize the brain and tissue donation.
- Please do not contact the Harvard Brain Tissue Resource Center directly to enroll. We cannot accept your donation to the RLS Foundation Brain Bank unless we have all of your registration materials on file at the RLS Foundation.
How will the process work?
When you become a donor you receive a card that you can carry in your wallet or purse which instructs your designated next-of-kin to call the Harvard Brain Tissue Resource Center immediately upon your death. The Harvard Brain Tissue Resource Center will then arrange ALL aspects of the donation.
Who can serve as my next of kin?
State laws determine the hierarchy of legal relationships. Generally, all legal guardianships, powers of attorney, and other court-appointed relationships end at death. The surviving legal next of kin is the first to fulfill one of the following requirements:
- Spouse (unless divorced or legally separated)
- Adult child (if more than one, all must agree)
- Parent
- Sibling (if more than one, all must agree)
- Other relative (niece, nephew, grandchild, etc.)
- Executor or administrator (if already appointed)
I am not a U.S. resident. Can I still participate?
Unfortunately, only U.S. residents are eligible to participate. This is not a Foundation policy but a policy of the Brain Bank. They are not permitted to accept foreign tissue donations. We have many people ask us about this, and unfortunately there are no exceptions to this rule.
If my brain and tissue are donated for RLS research, will my family be able to have a funeral for me? Will my body be disfigured?
Brain donation does not conflict with most religious beliefs and will not interfere with an open casket or other traditional funeral arrangements. The donor's body will not be transported to the Brain Bank or Harvard—only the donated tissue.
Can I donate my tissue for RLS research and still donate my organs for transplantation?
Unfortunately, brain donation for research and organ donation are generally not compatible because of the very limited time constraints allowed for donation after death.
If you have previously registered to donate your brain or other organ(s) to another program and wish to participate in the RLS Foundation Brain Bank Program, please contact your original donation program. You may or may not be able to donate through both programs. If donation through both programs is possible, the original program that you registered with will need to coordinate this process.
If you have questions, please email the RLS Foundation at rlsfoundation@rls.org or call us at 507-287-6465.
We need your help. Please consider making an anatomic gift and then speak with your family members about your wish to help solve the puzzle of restless legs syndrome. Contact us today to receive registration materials.
Where can I get more information?
Feel free to give us a call (507-287-6465) or send us an email (rlsfoundation@rls.org) for more information. You can also visit the Harvard Brain Bank to find out more.