Over the years, the specific targets of MS research have been refocused and revised. The MS Society has reconsidered and remained committed to its focus on research. At the same time, the scope of research topics has expanded, as have perspectives of the Society's role. Although MS research has traditionally been conducted on behalf of patients who remained in the background, now—to a small, but increasing degree—patient perspectives have stimulated new areas of research. New disciplines have emerged. Health care policy, functional status measurement, and quality-of-life assessment are all relatively new areas of research and are critically important for improving the lives of people with MS. The spectrum of current MS research ranges from strategies to develop treatments that impede the disease process, to treatments for specific symptoms, to research aimed at promoting successful adaptations to the illness, including optimizing the abilities of people with MS to function in their daily lives.
In December 1998, the National Multiple Sclerosis Society asked the Institute of Medicine to undertake a strategic review of MS research on its behalf. This report presents the research strategies and programs that the committee believes are likely to be the most productive and most important in the near future. Throughout the study, the committee sought to identify windows of opportunity for research, such as those created by new discoveries about the self-repair mechanisms of the brain or new disease-specific changes in gene activation. The committee also sought to identify research needs where the windows of opportunity are less transparent, such as the development of evidence-based approaches to address varied information needs of people with MS and to treat the fatigue and pain that so often accompany MS. Ideas for the future are built on the review of current knowledge and gaps in the biomedical and social science of MS. The intended audience of this report includes the architects and developers of MS research programs, as well as people with MS and their families who want to learn what is currently known about MS and what might lie ahead.
The report covers three broad areas: (1) biomedical aspects of the disease, causes, course, and treatments (Chapter 2, Chapter 5, and Chapter 6); (2) adaptation and management (combination of medical, technological, and psychosocial aspects) (Chapter 3 and Chapter 4); and finally, (3) proposals for research managers to facilitate research progress (Chapter 7).
The ultimate goal of research in MS is the development of interventions that can improve the lives of those living with MS and can prevent or cure MS. However, understanding of the MS disease process is not yet sufficient to predict which therapeutic strategies will be most effective. Although the new disease-modifying drugs are a major leap forward, it is important to remember that they are not a cure, nor are they effective for all patients. The recommendations