As a person living with multiple sclerosis and rheumatoid arthritis, my options for organ and tissue donation are limited. Earlier this week, I posted regarding organ donation in general and RA. Many of the same rules which apply to RA patients also apply to MS patients. In general, we cannot donate bone marrow or most tissues for transplantation. The ultimate donate-ability of our organs would be determined after our death by the organ transplant team.
The donation of blood, organs, and tissue help to save and improve the lives of countless people each year. However, the donation of brain and spinal cord tissue may hold the key to curing multiple sclerosis one day. Persons living with MS (and their family members) may choose to donate their brain and spinal cord tissues, spinal fluid, other specimens to an MS-specific tissue bank. Planning ahead is vital as brain tissue must be recovered and prepared within four hours after death to be suitable for use in research.
MS Brain and Tissue Banks
Only a few tissue banks in the United States specialize in postmortem human brain and spinal cord tissue in multiple sclerosis research. Three of these tissue banks are funded in part by the National MS Society. The banks were established to procure, process, preserve and distribute multiple sclerosis and non-MS (control) autopsy material to research laboratories involved in MS research. They work together to ensure that high-quality tissue specimens are available for neuroscientists worldwide.
The Human Brain and Spinal Fluid Resource Center at the UCLA-affiliated Veterans Administration Hospital in Los Angeles has been collecting tissue for neurological and psychiatric research for over 50 years. It regularly "provides researchers with the highest quality and quantity of pre- and post-mortem brains, spinal cords, cerebrospinal fluid, serum, blood cells, and urine to use in their investigations of neurological and psychiatric diseases."
The Rocky Mountain MS Center Tissue Bank in Colorado has gathered tissue specifically for MS research since 1976. Scientific studies conducted with samples from the Rocky Mountain Center "have led to several key discoveries and over 150 publications." The Center is also interested in receiving donations of "healthy" brains from persons not living with MS.
The MS Tissue Repository at the University of Illinois in Chicago was established in 2008 with a grant from the National MS Society. The Repository is highly interested in obtaining the rare MS case where a patient dies relatively early in the course of the disease when acute inflammatory demyelinating lesions are present. It is believed that these initial, acute lesions may be more likely to provide answers to the cause of MS.
You Must Plan Ahead To Donate Brain Tissue
"While deeply personal, the decision to donate has far-reaching effects as scientists unlock the mysteries of multiple sclerosis. If you would like to donate, arrangements must be made in advance because it is important that tissue is taken within a few hours of death." - Rocky Mountain MS Center Tissue Bank"¨
While the protocol for collecting tissue samples after death is uniform between the three MS tissue banks mentioned above, the procedure for signing up to be a donor may differ. The Rocky Mountain MS Center Tissue Bank requires four forms to be completed, signed, and returned to the Center, including the signature of two witnesses: a consent form, a tissue donation permit, a donor information enrollment form and a form granting authorization to release and/or obtain patient information.
Upon completion of the four forms, you will receive a Tissue Donation Identification Card identifying you as a donor. You will also receive copies of your donation forms to give to your family members, family physician and/or nursing home administrator. It is vitally important that relatives and close friends know of your donation plans so that they can initiate the notification procedures immediately after your death.
Donation protocols may vary by state. Talk to your doctor about state regulations regarding tissue donations to make sure your wishes are complied with. Even if you live outside of Colorado, the Rocky Mountain MS Center can help you obtain this information.
The Collection Procedure
As tissue donation is best if made within four hours after death, relatives should immediately notify the Rocky Mountain MS Center Lab. The tissue bank coordinator is on 24-hour call. The MS Center will arrange and pay for the transportation of your body to the nearest hospital, where a local pathologist will collect tissue from the brain, spinal cord, cerebrospinal fluid and blood as quickly as possible to preserve the cellular structure of the tissue.
"The brain and spinal cord are dissected in 1 cm coronal sections and then thoroughly examined for MS plaques and other pathology. Each section is digitally photographed before any lesions are dissected. Plaques are removed and then bisected, with one half frozen in liquid nitrogen and the other half placed in formalin." - Kenneth C. Dole, Erik S. Nilsen, Allen C. Bowling (Winter 2007) (pdf)
These procedures are performed in the course of a routine autopsy and will not delay funeral arrangement or disfigure the deceased. If the donor’s residence is not in Colorado (or near one of the other tissue bank locations), the MS Center Tissue Bank will contact a local pathologist to perform the autopsy. A grant will pay the local pathologist for the procedure. "¨"¨
The MS Center will then arrange and pay for the transportation of the deceased to the funeral home of choice. The research procedure is done at no cost to the family. However, funeral costs remain the responsibility of the donor’s family. (Note: the MS Tissue Repository in Chicago specifies that they do not pay for transportation of the body from the hospital to the funeral home.)"¨"¨
Contribute to MS Research While You Are Alive
Before donating your brain, you can contribute to the the Accelerated Cure Project for Multiple Sclerosis which has created a large-scale, multidisciplinary MS Repository of blood samples and data from people living with MS and matched controls. They offer these samples to researchers investigating the causes of MS in exchange for the data generated from the samples so that results from disparate (or dissimilar) experiments can be combined.
Finally, as an MS patient you can contribute to the largest MS Patient Registry of its kind in the world established by the North American Research Committee on Multiple Sclerosis (NARCOMS) in 1993. The goals for NARCOMS are to: 1) facilitate a confidential way for patients to supply valuable information to researchers about their course of disease that may lead to more effective treatments and care for people living with MS, while reducing the time and cost of conducting studies; 2) provide a worldwide research resource for people living with MS so they can provide information about themselves and their course of disease; 3) develop new collaborations between researchers, patients, and healthcare providers to increase knowledge of effective treatments, the amount of peer-reviewed publications, and the quality of healthcare services; raise awareness of MS; promote greater understanding about MS; develop a computerized database representing at least 10 percent of the MS population in the US and track changes over time with semi-annual update surveys.
To learn more about blood, organ, and tissue donation, read these posts:
(more posts to come)
Contact Information for the MS Tissue Banks:
Human Brain & Spinal Fluid Resource Center"¨
Phone: (310) 268-3536"¨Fax: (310) 268-4768
"¨24 hour pager: (310) 268-3536
MS Center Tissue Bank
"¨Rocky Mountain MS Center
"¨Phone: (303) 788-4030, Ext. 105"¨
24 hour pager: (303) 649-6602
MS Tissue Repository
"¨University of Illinois"¨
Phone: (312) 996-5763"¨
24 hour pager: (312) 996-2242 Code 2947
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.