How To Donate Brain Tissue

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)
• Father/Mother
• Brother/Sister
• Grandfather/Grandmother
• Uncle/Aunt
• 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. Due to increasing difficulty in obtaining vital medical records, it is more likely that donations will be accepted if records are collected by the family and sent to the Tissue Bank Coordinator prior to or at time of death.

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.

Can I donate to the RMMSCTB, and still be a general organ donor?

Having MS does not necessarily prevent you from being an organ donor. Being an organ donor does not necessarily eliminate you from being a brain donor. Criteria for both are frequently changing so we suggest that you register for both and let your family know that both are important to you. At the time of your death, your family can work with the tissue bank coordinator to make sure your wishes are met in the best way possible

Legal Advice

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.

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.