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Organ Donation in MS Research

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Organ Donation in MS Research

Organ Donation in MS Research
Project RESTORE

Over the years, many people who lived with multiple sclerosis (MS) have donated, upon their passing, their brain, spinal cord, and other organs important to the functions of the immune system. There gifts are truly invaluable to the research conducted at the Neuroimmunology Clinic of the National Institute of Neurological Disease and Stroke (NINDS).

We currently have an ongoing study that includes patients in our clinic who wish to eventually donate their organs for MS research. In this study, we will determine how the biology of MS relates to its evolution over time. To do this, we will follow patients yearly by collecting clinical data, blood samples and MRI scans. To acquire meaningful data about MS, the whole spectrum of the disease and its evolution over time must be captured. Since the disease is lifelong once it begins, we are studying people living with MS at all disease stages (including newly diagnosed or early disease and longstanding disease) and following them for many years until their death.

This is a unique, extremely long-term program that has the ambition to understand MS in a comprehensive and lifelong multimodal approach.

Why should I donate my organs for research?

The decision to donate organs for the purpose of research (or even transplantation) is a very personal choice and may not be for everyone. While substantial progress has been made in understanding the biology of MS, there are still many unanswered questions. Some of these may be addressed by studying the brain, spinal cord, and other organs and tissues under the microscope. Such research could lead directly to new treatments that are safer and more powerful and that may promote repair and restoration of function.

How can I donate my organs for research?

If organ donation is something you wish to pursue you should discuss with your next of kin, who will ultimately see that your wishes are granted. To carry out someone’s last wishes is truly a rewarding experience. As researchers, we are incredibly thankful for organ donation, and we have found over many years, that our patients’families are equally grateful. Families have commented that knowing their loved one’s organs may lead to promising discoveries and further MS research can ease the pain of their loss.

If you are interested in pursuing organ donation or learning more about other research studies please call Joan Ohayon at 301-496-3825 or by email at Joan.Ohayon@nih.gov.