MS Research: MS Registries and Tissue Donation

In today’s post, I will introduce you to a few non-profit organizations which are very focused in their purpose and research activities. From patient registeries, to knowledge databases, to tissue samples and brain donations, these smaller organizations and projects are doing some wonderful work in MS research.

NARCOMS (Consortium of MS Centers)

The North American Research Committee On Multiple Sclerosis (NARCOMS) initiated in 1993 by the Consortium of Multiple Sclerosis Centers (CMSC) Project, is led by Dr. Tim Vollmer, an international leader in multiple sclerosis care, immunology, and MS research. With support from United Spinal Association, Paralyzed Veterans Association, National MS Society, and unrestricted grants from pharmaceutical companies, NARCOMS has developed an MS Patient Registry that is the largest of its kind in the world.

Accelerated Cure Project for Multiple Sclerosis

The Accelerated Cure Project (ACP) for Multiple Sclerosis is a national nonprofit organization (originally named Boston Cure Project) dedicated to curing multiple sclerosis by determining the cause of MS.

Our main effort is the creation of a large-scale, multidisciplinary MS Repository of blood samples and data from people with MS and matched controls. We make these samples available to researchers investigating the causes of MS. In exchange for access to the repository, researchers agree to return the data they generate from the samples so that results from disparate experiments can be combined.

We are also developing a Cure Map to establish and document what is known and what is not known about the causes of MS. From the Cure Map, Accelerated Cure Project will facilitate the research most likely to reveal the causes of MS in the shortest time through use of our MS Repository.

Rocky Mountain MS Center Tissue Bank

Scientists throughout the world depend on the Rocky Mountain MS Center Tissue Bank to supply high quality human brain tissue and cerebral spinal fluid to support their research. Funded in part by the National MS Society, the Tissue Bank is one of only four MS-related tissue banks in the nation. The Tissue Bank has distributed specimens to more than 160 investigators worldwide and over 1,600 people have consented to be donors after death.

Human Brain and Spinal Fluid Resource Center

The Human Brain and Spinal Fluid Resource Center, located in Los Angeles, was established in 1961 to provide a vital service to neuroscientists. The Center collects, stores, and distributes donated tissue to research scientists around the world. Collection occurs through our “Gift of Hope” anatomical donor program which accepts tissue donation from people with neurological or psychiatric disorders. By arranging to donate tissue after death, you are giving a priceless gift to humanity.

Multiple Sclerosis Tissue Repository

The Multiple Sclerosis Tissue Repository was established with a grant from the National Multiple Sclerosis Society in 2008 in order to further MS research through increasing accessibility of MS brain tissue. At the University of Illinois at Chicago (UIC) MS Tissue Repository our goal is to function as a connection between MS communities and research laboratories around the country. In order to perform new MS related research scientists must have access to brain and spinal cord tissue from MS patients. There is particularly a critical need for tissue samples from patients who have acute MS and succumb prematurely.

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MS Research and Registries: NARCOMS, Accelerated Cure Project, and Tissue Donationa