Monday, January 21, 2008

NARCOMS Project - MS Patient Registry

In case you don't already know about it, or haven't taken the time to contribute, the NARCOMS Patient Registry needs your input as a patient with Multiple Sclerosis. It's easy, it's confidential, and it's essential for rapid progress in the development of better treatments for MS and for greater understanding of the disease. As of November 2007, the number of participants has reached 37,600 and new participants are joining every day. (Enroll online)

Here's some information regarding the project and the organization behind it, CMSC. My neurologist happens to be one of the committee chairmen and has been involved in the Consortium from its beginning in 1986. This is an extremely worthwhile use of your time. Go check it out.

The Consortium of Multiple Sclerosis Centers (CMSC) provides leadership in clinical research and education; develops vehicles to share information and knowledge among members; disseminates information to the health care community and to persons affected by Multiple Sclerosis; and develops and implements mechanisms to influence health care delivery.

Organized in 1986 under the direction of neurologists interested in the clinical care of multiple sclerosis, CMSC has grown to become a multi-disciplinary organization providing a team approach to MS care and a network for all health care professionals and others specializing in the care of persons with MS. Since 1986, the CMSC has grown rapidly and currently has over 200 member centers in the United States, Canada, and Europe, representing over 4,000 health care professionals worldwide who provide care for more than 150,000 individuals with multiple sclerosis.

The CMSC, in conjunction with Rehabilitation in Multiple Sclerosis (RIMS), has developed an online journal, the International Journal of Multiple Sclerosis Care which seeks to improve the quality of care for patients with multiple sclerosis through international, multidisciplinary cooperation and communication. Published quarterly, the International Journal of Multiple Sclerosis Care (IJMSC) contains peer-reviewed clinical and original research articles on topics of interest to MS care providers, including physician care, nursing care, rehabilitation, psychological care, and psychosocial care.

The North American Research Committee On Multiple Sclerosis (NARCOMS) project was initiated in 1993 by CMSC and is led by Dr. Tim Vollmer, an international leader in multiple sclerosis care, immunology, and MS research. The project is based at Barrow Neurological Institute in Phoenix, Arizona. NARCOMS has developed an MS Patient Registry that is the largest of its kind in the world. The primary purpose of the NARCOMS project is to facilitate multi-center research in the broad field of Multiple Sclerosis. Collaboration between centers of excellence in Multiple Sclerosis is essential for rapid progress in the development of better treatments for MS and for greater understanding of the disease.

As of November 2007, the number of MS Patient Registry participants has reached 32,600 and new participants are joining every day. Convenient online enrollment for anybody diagnosed with MS is available at this website (Enroll online). 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, free of charge. The MSQR includes original review articles, NARCOMS news, breaking news, as well as listings of clinical trials in progress and open for enrollment.

The International Committee on Databases in Multiple Sclerosis (ICODIMS) was founded in 2000 in order to create a collaborative milieu for databases and registries worldwide. Currently there are 12 countries participating in the ICODIMS project, with representatives from Australia, throughout Europe, Latin America, and North America. These representatives have met to establish the basic criteria needed for an international cross talk: what data should be collected to assure compatibility among the various cultures. ICODIMS hopes to use the results of this work to compare and evaluate MS patients from different environments, compare their characteristics treatments and outcomes and to establish standard terminologies.

NARCOMS is a project of the Consortium of Multiple Sclerosis Centers and is supported by grants and in-kind services from United Spinal Association, Paralyzed Veterans Association (PVA), and the National Multiple Sclerosis Society. Additional support has been provided by unrestricted grants from the following pharmaceutical companies: Berlex, Biogen, Immunex, Serono, and Teva Neuroscience.


  1. I completed the NARCOMS, took 30min, very simple.

  2. I also completed the NARCOMS MS Registry and didn't take long. I even mentioned your blog post in my blog and linked it to you. I think more people will register.