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.
• 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.