Letter From the Editor
The NARCOMS MS Patient Registry, a project of the Consortium of Multiple Sclerosis Centers, is now entering its sixth year of operation. Over the last 6 years it has grown from a small pilot study executed in Connecticut to a nation-wide database that includes data on over 30,000 patients with multiple sclerosis (MS). As individuals who participate in the patient registry can tell you, the biannual questionnaires are comprehensive and cover a large breadth of issues related to MS. These issues include disability levels, quality-of-life issues and treatment patterns.
The original goal of the NARCOMS MS Patient Registry was to assist the development of better therapies for patients with MS in two ways. The goal was first to be a resource investigators could use to identify individuals with MS that have the characteristics needed for a certain study, such that the NARCOMS project could notify those eligible individuals so they could participate if they wished. The second goal was to gather detailed information about the nature of the MS population, specifically the disease impact and approaches to treatment throughout the United States. Since its inception, the database has been used for a wide variety of research. Recent use of NARCOMS data includes factors affecting quality of life, health care experiences of minority populations with MS, dysphagia (difficulty swallowing), enhancing clinical trial design, disability levels following treatment with disease-modifying agents, depression, and aging in MS.
Since we started, the Internet has become available as a stable communication medium for almost two-thirds of Americans. Therefore, we have found it effective to communicate with many participants in the Registry through the Internet with electronic versions of our questionnaires. This has been beneficial to the project, most noticeably through the dramatic decrease in the cost associated with gathering the data to be used by investigators. The electronic cohort also offers the opportunity to substantially accelerate the conduct of certain types of studies. In particular, when a specific question arises for which we need more information, the Internet provides the most rapid and least expensive way to query the appropriate MS patient population. It is our hope that patients and their families will understand the value of this medium for the conduct of research and will participate using this approach in a significant way. We realize however, that relying solely on the Internet as a means for communication with participants in the Registry would bias the population and leave out many patients with MS who, for various reasons, do not access the Internet. Therefore, the NARCOMS project will continue to provide paper questionnaires by mail to anyone who wishes this means of participation. By balancing these two approaches, we hope to maintain a relatively accurate representation of the MS population.
Because of the success of the NARCOMS MS Patient Registry, my staff and I see value in expanding it to a worldwide effort. This would allow researchers to look at population-based factors in locations other than North America and demonstrate the impact of variations in access to health care and in national policy on the long-term consequences of MS. Obviously there are challenges in developing a questionnaire that is relevant across multiple cultures and across multiple national boundaries, but we believe this is solvable. Our biggest challenge is in translating our questionnaires appropriately so that they are available to non-English speaking individuals. We will initiate an international study by early 2006.
Although we have accomplished our goal to a great degree, we believe much more is possible if we can transmit the enthusiasm we have for the database and promote a clear understanding of the potential value of the database to current and future participants. It is important for the database to grow, such that larger numbers of patients are available to answer critical questions. In addition, it is absolutely essential that individuals participating in the database continue their participation long-term so that we have longitudinal data. Data on the same patients over time is critical in determining the true consequences of interventions on the natural history of the disease.
This project is truly a collaboration with the MS community and the research community. We greatly appreciate the more than 30,000 patients who have participated in the database to date and look forward to the participation of more patients in the future. I would like to personally thank each one of you for your efforts and we look forward to working with you in the future as we seek to promote the cure of MS.
Much thanks to you all,
Sincerely,
Timothy Vollmer, MD
NARCOMS Director
Editor, MSQR
Van Denburgh Chair, Neurology
Barrow Neurological Institute
St. Joseph’s Hospital and
Medical Center
Phoenix, Arizona