Guest guest Posted May 7, 2004 Report Share Posted May 7, 2004 For people with MS! NARCOMS Registry Enroll NARCOMS Director NARCOMS Staff Contact NARCOMS M S P a t i e n t s Home > MS Patient > CMSC-NARCOMS: Information Information Goals and MissionThe NARCOMS Project was initiated in 1993 by the Consortium of Multiple Sclerosis Centers. Since that time, it has been led by Dr. Tim Vollmer, an international leader in multiple sclerosis care, immunology, and MS research. Based at Barrow Neurological Institute in Phoenix, Arizona, NARCOMS has developed an MS Patient Registry setting a world standard for data collection. NARCOMS was created to help 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. Project Status and InitiativesAs of January 2002, the number of Registry participants has reached over 20,000 and new participants are joining every day. Online enrollment has recently become available at this website and it is making it easier and faster to enroll. To date more than 3,000 new participants have enrolled in the Registry online. Multiple Sclerosis patients can enroll online. Registered patients can update their name and address 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. This newsletter is free of charge and includes original review articles, NARCOMS news, breaking news, and clinical trials in progress and open for enrollment.We hope that the MSQR will keep you abreast of recent findings and studies of interest. We also offer an online version of the MSQR that is freely available to the public. We encourage medical professionals in the field of Multiple Sclerosis to become involved in developing materials for the MSQR. Please contact NARCOMS if you are interested in authoring a review paper. The ative Studies Program is still in the planning stages, but ultimately hopes to bring a large network of researchers, physicians, and health care professionals at public and private institutions together as a group. These institutions will work toward the common goal of controlling and effectively treating Multiple Sclerosis. ICODIMS, the International Committee on Databases in Multiple Sclerosis, 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. Support/FundingNARCOMS is a project of the Consortium of Multiple Sclerosis Centers and is supported by grants and in-kind services from Eastern Paralyzed Veterans Association, Paralyzed Veterans Association (PVA), and the National Multiple Sclerosis Society. Additional support is provided by unrestricted grants from the following pharmaceutical industries: Berlex, Biogen, Immunex, Serono, and Teva Neuroscience. CMSC Online Journal of MS Care MS Exchange Home Contact CMSC Site Map Privacy Policy Disclaimer Quote Link to comment Share on other sites More sharing options...
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