MS Research and Registeries: NARCOMS, Accelerated Cure Project, and Brain Tissue Donation

Lisa Emrich Health Guide December 23, 2009
  • In Funding MS Research: National MS Society, Myelin Repair Foundation, Nancy David Foundation, Montel, I focused upon MS organizations in the United States which directly fund and support researchers.  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.

     

    OUR VISION: The Vision of the NARCOMS/Global Patient Registry is to facilitate multi-center research in the field of multiple sclerosis (MS). We strive to develop collaboration between centers of excellence in MS throughout the world to increase knowledge, leading to improved clinical care and quality of life for MS patients.

     

    OUR GOALS:
        •    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.
        •    Provide a worldwide research resource for people living with multiple sclerosis so they can provide information about themselves and their course of disease.
        •    Develop new collaborations between researchers, patients, and healthcare providers to:
        ◦    Increase knowledge of effective treatment
        ◦    Increase high quality healthcare services
        ◦    Raise awareness of MS
        ◦    Promote greater understanding about MS
        ◦    Increase peer reviewed publications

     

    The NARCOMS Registry is an active database of over 34,000 individuals who have MS which provides a way for individuals with MS to confidentially supply detailed information on their course of disease as well as their treatment. The questions asked include demographic information, MS-related medical history, immunologic and symptomatic therapies, health care services used, and a series of patient-assessed performance scales that reflect disability in eight domains of function.

     

    Individuals with Multiple Sclerosis who enroll in the NARCOMS Registry receive the printed version of the Multiple Sclerosis Quarterly Report (MSQR) four times a year. This journal is free of charge and includes original review articles, NARCOMS news, breaking news, as well as listings of clinical trials in progress and open for enrollment.
  Examples of MSQR reports arising from NARCOMS research can be found online.

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    NARCOMS encourages individuals with MS to enroll in the patient Registry to expedite and facilitate research in the field of Multiple Sclerosis. The goal of the Registry is to develop a computerized database representing at least 10% of the MS population in the US and track changes over time with semi-annual update surveys.  For more information see Enroll Now.

     

     

    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.

     

    Repository Overview:

    The Accelerated Cure Project MS repository is a collection of biological samples and data from people with Multiple Sclerosis (MS) and other demyelinating diseases, their affected and unaffected relatives, and unaffected, unrelated matched controls. The demyelinating diseases represented are: MS and Clinically Isolated Syndromes (CIS), Transverse Myelitis (TM), Neuromyelitis Optica (NMO) or Devic's, Acute Disseminated Encephalomyelitis (ADEM), and Optic Neuritis (ON).

     

    We are assembling the largest collection of samples and data from the described population available to date. Our eventual goal is to enroll 10,000 subjects, with a first phase to enroll 1,000 that is in progress now. (Click here to see our current enrollment status.)  We are currently collecting blood because it is readily accessible. Future plans include the addition of cerebrospinal fluid (CSF) and post-mortem brain and spinal cord tissue to the repository.

     

    Participating subjects are asked to refer any relatives who have one of the specified demyelinating diseases as well as one or two unaffected blood relatives or unrelated matched controls.  Our study is longitudinal, meaning that people with a demyelinating disease (cases) will be asked to return approximately annually for a new interview and additional sample collection. Those without a demyelinating disease (controls) may also be asked to return periodically. By following the subjects over time, we are able to ask additional interview questions, replenish previously collected samples, and obtain new types of samples.

     

    Find out more about sample and data collection or how to participate as a subject.  Downloads of the interview questions and details of the samples collected are also available.


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    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.

     

    Tissue banks provide a unique bridge between those who live with MS and the scientific community. Studies conducted with samples from the Center have led to several important discoveries and 130 publications.   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.

     

    For more information on making a donation, visit the How To Donate section of their website.

     

     

    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.

     

    The Center also provides a continuous boost to biomedical research by helping scientists help patients. It provides researchers with the highest quality and quantity of pre- and post-mortem brains, spinal cords, cerebrospinal fluid (CSF), serum, blood cells and urine to use in their investigations of neurological and psychiatric diseases. By applying a wide variety of standardized research methods, scientists can test their hypotheses utilizing the specimens provided by the Center.

     

    Answers to many frequently asked questions about the Center are available as is information about our “Gift of Hope” anatomical donor program. For further information, the Center's professional staff is available to answer any questions about the resources.

     

    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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    One of our principle objectives at UIC is to develop methods of outreach to neurologists and patients in order to obtain rare MS cases dying relatively early in the course of the disease. These types of cases are especially valuable because at this stage there are still acute inflammatory demyelinating lesions present. As MS progresses acute inflammatory lesions become sclerotic or scarred, reflecting secondary degenerative processes that take over in MS. Therefore, the more chronic cases of MS have extensive scarring that replace the initial lesion(s). Most researchers believe that study of the initial, acute lesions are more likely to provide the answer to the initiating event(s) and cause of MS. We therefore urge you to actively participate in the quest for an MS cure through increasing awareness of MS donation options to potential donors and registering yourself if applicable.

     

    We understand that the decision to donate might be difficult but we perceive every donation as an invaluable gift that has the potential of aiding scientists in their efforts to find a cure for MS. By opening a MS Tissue Repository in the heart of Chicago we anticipate that our efforts will advance MS research by making a wider range of tissue available to scientists. Every donation has the potential to be used for fifty-plus projects over many years; thus, each donation truly has the ability to yield significant impact. The process to register as a donor simply requires you to fill out a Donor Registration Packet and communicate your desires to donate to your next of kin and medical staff. We appreciate your interest in our center and look forward to working closely with you in our common goal of finding a cure.

     

    Read more about How You Can Help or How You Can Donate.

     

     

    It is important that we, as patients, do what we can to help further research into the causes and treatments of this disease.  I joined the NARCOMS registry shortly after diagnosis and complete an updated survey every 6 months.  The MSQR magazine which I receive is well worth the tiny amount of time it takes to complete the online questionaire. 

     

    I personally need to contact Accelerated Cure Project and offer up some blood samples and a thorough detailed medical history.  Perhaps I can get my brother to be my related control person (not affected by MS but related to me who has MS!)  I'm not quite really to donate my brain (I'm still using it), but maybe in the future.  Wink

     

     

    MORE INFORMATION ON HEALTHCENTRAL:

    MS Research and Registries

    Clinical Trials I: What You Need to Know

    Clinical Trials II: Phases and Protocols

    Clinical Trials III: Patient Participation

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.