MS patients wishing to donate should complete the donor enrollment forms (located under the “forms” heading below):
- Read the “Informed Consent/HIPAA form” carefully. Call the number provided if you have any questions about this information. Sign, date, and print your name on this sheet.
- Complete the “Donor Enrollment Info” form and the “Tissue Donation Consent”.
Send all three forms to the Rocky Mountain MS Center by mail to the address below.
Rocky Mountain MS Center
Attn: Tissue Bank
8845 Wagner Street
Westminster, CO 80031
Once the Center has received the documents filled out in their entirety, the donor will receive a donor card in the mail with information on how to donate tissue.
Please complete each of the following enrollment forms:
WHERE TO SEND YOUR COMPLETED FORMS
Please mail your enrollment forms to the Rocky Mountain MS Center Tissue Bank at:
Rocky Mountain MS Center Tissue Bank
8845 Wagner Street
Westminster, CO 80031
Frequently Asked Questions for Donors
Why should you donate your bodily tissues?
Multiple sclerosis research is limited to human tissue and cannot be studied in an animal model. Because MS affects the brain and spinal cord, experimentation on these tissues can only be carried out after death when such tissue can be collected. Such studies are designed to increase our understanding of the factors which may play a role in the cause of MS.
How do I enroll to be a Donor for the Rocky Mountain MS Center Tissue Bank?
To enroll to become a donor you need to complete the Donor Enrollment Forms. The completed forms should be returned to the Rocky Mountain Multiple Sclerosis Center. At that time a Tissue Donation Identification Card will be sent to you identifying you as a donor. Relatives and close friends should know of your donation plans so they are aware of your wishes and the notification procedures.
Who is my Legal Next of Kin?
The person who is considered the legal "Next of Kin" is determined in descending order as follows:
- Spouse (separated is acceptable, divorced is not)
- Adult Son/Daughter (oldest to youngest, including adopted)
- Legal Guardian
- Other Person Assuming Responsibility for Burial
Who else should know about your plans for donation?
At the very minimum, the legal next of kin should be aware of plans for your tissue after death. Your family physician and/or nursing home administrator should be given copies of the donation forms. Other relatives and close friends should also be notified.
What if my Next of Kin does not give consent for my tissue donation at the time of my death?
Consent and cooperation from your Next of Kin is critical for a successful donation to take place. We will always respect the next of kin's wishes if they refuse or withdraw consent for donation at the time of death, regardless of the deceased's own pre-consent.
After becoming an enrolled donor, will the RMMSCTB guarantee my tissue will be accepted for donation?
Unfortunately, no. The RMMCS Tissue Bank will try to accommodate every incoming donation; however, not all circumstances are optimal for tissue acquisition. Time constraints and location of a local pathologist are often the largest issues. Potential donors can combat these issues by locating a pathologist in their area of residence, and instructing their next-of-kin to call the on-call tissue bank coordinator as soon as possible after death, or before, if death is imminent.
How do I update my information (change of name, address, Next-of-Kin)?
To update your information, please contact the Rocky Mountain MS Center Tissue Bank at 303-788-4030 x120.
What if one has already willed one's body for transplantation?
Since a virus may cause MS, we do not recommend that eyes, kidneys, or other organs be donated for transplantation.
It is not necessary to have legal counsel in preparing these organ donation forms. However, different states vary with regard to their donation protocols. If you live outside Colorado, we strongly suggest you review with your physician and/or a local pathologist, state regulations regarding tissue donations to ensure your wishes are complied with. If you wish to contact the Center, we can help you to secure this information.
Frequently Asked Questions for Next of Kin
When should I notify the on-call Tissue Donation Coordinator of the death or imminent death of the donor?
Relatives should notify the Rocky Mountain Multiple Sclerosis Center Lab immediately after death, or before hand if death is imminent. The tissue bank coordinator is on 24-hour call, however, very few arrangements for pathologists can be done after business hours or during the weekend. If the donor is in a critical state, it is beneficial to alert the Rocky Mountain MS Center Tissue Bank of this condition before the time of death. After death, the remains should be transported to the hospital morgue, or the funeral home of the family's choice and kept cool until tissue removal arrangements can be made.
How will transportation of the donor be handled?
At the time of death, it is the family's responsibility to notify their funeral home of choice and indicate that the remains must be held and kept cool for tissue donation. Often times, the funeral home will offer to transport the donor's remains to and from a procedure room for tissue removal. A Tissue Bank Coordinator will then work with the funeral home to locate a local pathologist and arrange transport to and from the facility for tissue removal.
What is the time frame for tissue donation?
If the donation occurs in the Denver area, typically the tissue is removed on the following business day after death of the donor. The tissue removal usually takes 1-3 hours. Afterwards, the Tissue Bank Coordinator arranges the transport of remains to the funeral home of the family's choice. The remains will arrive at the funeral home for personal arrangements 24-36 hours after death.
If the donation occurs out side the state of Colorado, the time of tissue donation will vary depending on the region the donor lives, the day the donor passes away, and the availability of a local pathologist. The time and location of the removal will be done at the discretion of the local pathologist, typically in the local hospital pathology department, or the procedure room at the funeral home and during the following business day. The remains will arrive at the funeral home for personal arrangements 24-72 hours after death.
Will Brain donation affect my funeral arrangements?
The research procedures are performed in the course of a routine autopsy and will not delay funeral arrangement or disfigure the deceased. The research procedure is done at no cost to the family.
My relative just died but was not signed up to be a donor with the Rocky Mountain MS Center Tissue Bank. Can I still donate their tissue?
Yes. At death donations will be considered on a case-by-case basis. Please contact the Tissue Donation Coordinator at 720-626-6060 as soon as possible after death, or preferably, when death becomes imminent.
What is the cost of tissue donation?
There is no cost to donate tissue. The Rocky Mountain MS Center Tissue Bank will pay for all arrangements regarding tissue removal and transport to and from the hospital/procedure room of the local pathologist, or transport to and from University Hospital for donations in the Denver area. The Tissue Bank does not pay for any funeral arrangements regarding the remains after tissue donation.
Will I be able to find out what specific purpose the donor's tissue will be used for?
The Rocky Mountain MS Center Tissue Bank stores tissue fixed or frozen until samples are requested from a MS investigator. The most recent studies include neurological imaging for improvement of MS diagnosis and characterization of active and chronic lesions.
Will the Rocky Mountain MS Center pay for funeral arrangements such as cremation?
No. The Tissue Bank will pay for any charges accrued during the tissue removal and transport to a facility where the tissue is removed. After the removal, the next of kin is responsible for any funeral arrangements afterwards.
Will we be able to donate the entire body to the Rocky Mountain MS Center?
No. The Tissue Bank can only accept CNS tissue, the brain, spinal cord, optic nerve and cerebral spinal fluid. The remains after the removal of tissue harvest must be released to a funeral home or mortuary of the family's choice.
Multiple sclerosis damages human brains, so MS researchers often study mice brains. How can multiple sclerosis be cured or prevented without studies of human brains? Researchers need the anatomical bequests of MS brains.
Harvard Brain Tissue Resource Center
Harvard University specifically collects and studies brains (and brain tissue), including those with multiple sclerosis. The Harvard Brain Tissue Resource Center (HBRTC) accepts brains with and without disorders.
Preregistration allows the best chance of a successful donation. Time is crucial because brains must be iced within six hours of death, and transported to HBRTC within 24 hours.
The main HBRTC contains donation information on how to donate a brain to Harvard for research, offers a “tour” of the brain biobank, and provides educational material on neuroanatomy.
Anatomical donations in my city
Rochester, Minnesota, home of the Mayo Clinic, includes medical school training that uses whole body donation. I have signed up to donate. One big plus for donors, besides giving future doctors actual experience with real human bodies, is free cremation after completion. While you can still have your ashes returned to your family for burial, they also offer a group burial with other donors at no charge.
However, at the present time, they do not allow for brains to be separated for use in a biobank like the HBTRC. There are several reasons for this. First, in order to take out the brain, it requires an autopsy — a time-critical autopsy, as noted above. Then, because the integrity of the whole body could be considered compromised from one point of view, the rest of the body (incorrectly in my opinion) is deemed unacceptable for medical students.
Because the Mayo Clinic is in my hometown, it has a majority of my medical records to go along with my body. I had back surgery here when I was 12 years old (broken back). Even without my brain, the opportunity to study a spinal fusion decades later seems pretty darn valuable to me.
Why I plan to donate
My mother died last year (94 years old with dementia, but she knew me to her peaceful end). She donated her body to the Mayo Clinic, and I received her ashes and buried them a few days ago. There will be a ceremony in the spring where I will be able to meet some of the doctors who benefited from this gift. My mother’s death may save lives in the future.
This is why I also plan to donate. However, it really bothers me that there is an acute shortage of MS brains for research. I spoke to the people at HBTRC last week, and was told they had received only one or two MS brains in recent years.
Since the Mayo Clinic already has the body donation, related methodology, and the cremation process in place, it makes sense that they could collaborate with HBTRC. I plan to approach them, with the help of the HBTRC people, to work out a coordination of efforts to increase MS brain donations as soon as possible.
We have hundreds (maybe thousands) of people with diagnosed MS here in Olmsted County, my hometown. Many people have medical records at the Mayo Clinic that could contribute to a much more complete understanding of MS.
Donation value of a brain
I think my brain is worth a free cremation for my body. I also am going to encourage the use of the rest of donors’ bodies for research beyond med school training.
I am not content to just let my MS brain be disposed of for casual training for which any brain will do. The Harvard donations are shared with many researchers, not just those at Harvard.
So, I hope to make change happen at the local level for brain donations to Harvard’s biobank, and hope more MS patients will consider doing the same. Maybe the cure for MS lays in our very own brains.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Print This Page