In 1993, NARCOMS was established by the CMSC in order to develop a patient Registry to help facilitate multi-center research in the broad field of Multiple Sclerosis. The Registry is a database consisting of functional, accessible information that is used by investigators to develop research strategies and survey MS issues. In 1996, Dr. Timothy Vollmer, M.D., was appointed Director of NARCOMS. He initiated enrollment through recruitment strategies and began to assess disease specific information through an enrollment questionnaire. Recruitment was initially slow to progress due to insufficient funds and an overall lack of awareness of the Registry’s function and value.
As the size of the Registry began to increase, pharmaceutical companies began to provide funding which increased enrollment. When the number of participants reached 3,000 patients, Dr. Vollmer proposed to the leadership of the Eastern Paralyzed Veterans of America that they enter a collaboration to enroll veterans with MS in the patient Registry. John L. Carswell, Executive Director for Health Policy, agreed to do a large advertising campaign through the various VA magazines and postcard mailings. The campaign resulted in the enrollment of more than 2,000 veterans with Multiple Sclerosis. In addition, when Dr. Vollmer assumed the responsibilities of Editor for the MSQR, the EPVA agreed to cover the cost of printing and mailing of the MS Quarterly Report (MSQR), to all NARCOMS patient Registry participants.
The first major use of the Registry’s database was in 1998 when Serono Laboratories funded a survey of the registrants in order to evaluate the reasons for non-adherence to immunologic therapies. The results of that survey were presented in conferences and served to demonstrate one of the practical uses of the Registry's database.
Since then, the Registry has become widely recognized as a valuable resource for surveying MS patients as well as for the recruitment of patients for particular clinical trials. As the Registry’s information increases and its usefulness achieves prominence, it is positioned to play a leadership role in establishing an international registry that would allow cooperative, comparative studies.
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.
Support/Funding
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.
