Discovery of the therapeutic potential for neural, glial, and stem cell transplantation in the brain and spinal cord. Increased awareness of the need for objective evaluation of patient perspectives in health care assessment and clinical trials, and the incorporation of quality-of-life measures into research on MS.
Recognition of involvement of axonal pathology in MS and its association with the development of disability. Molecular dissection of myelinated axons, leading to an understanding of mechanisms of electrical impulse conduction in normal myelinated axons and of the restoration of conduction in demyelinated axons. Discovery of the relevance of cytokines to MS pathogenesis, including their involvement in inflammation, immune responses, and cellular repair in brain.
Establishment of the infrastructure necessary to identify genes involved in susceptibility to MS. In recent years, progress in MS research has accelerated see Box 1. The s saw the development of the first therapies that can modify the course of the disease. Admittedly, these therapies are not a cure, nor do they work equally well for all patients, but they are a major breakthrough.
Twenty-five years ago, the possibility that human nerves damaged by disease could be repaired was almost unthinkable. Now, the many years of basic research on the development and function of nerve cells are beginning to bear fruit.
mHealth: app assessment for multiple sclerosis
A number of therapeutic strategies to repair nerve cells are under serious investigation to treat a variety of diseases and injuries. For the most part, these strategies are still experimental and remain to be proven safe and effective for human use, but they have the potential to revolutionize the treatment of neurological disorders. To be approved, a study must be timely and of national significance. While this study is clearly significant for MS patients and the research community, its value also lies in its potential as a model for the development of similarly broadly based strategic research plans for other health fields.
People with MS, their families, and friends are understandably discouraged that no cure has resulted from this year effort. During this period, many diseases have succumbed in the face of concerted research efforts. Polio and smallpox are diseases of the past. Neurological diseases, however, are among the most difficult to study, and although beneficial therapies have been developed in the last decades for Parkinson's disease, Alzheimer's disease, and epilepsy, there is still no cure for any of the degenerative neurological diseases. MS is not alone in this regard.
This is, nonetheless, a period of tremendous optimism about future therapeutic strategies, due in large part to the accelerating pace of new discoveries about the cellular machinery of the brain and spinal cord, as well as the information explosion emanating from the human genome project. Since , various groups have met to review the status of research in multiple sclerosis.
Each group had a somewhat different goal and each resulted in different initiatives.
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This commission laid out a detailed set of recommendations, to the point of recommending how much the MS Society should spend on specific projects. Other recommendations included the establishment of a dedicated staff member to oversee multiple sclerosis research at the National Institute of Neurological Disease and Stroke which was implemented and continues to this day , and the integration of MS research across the National Institutes of Health which was not implemented.
In the mids, some members of the MS Society argued that more of the their funds should be spent directly on patient services and less on supporting basic research. At the invitation of the MS Society Board of Directors, the IOM convened a workshop to discuss the question, Should the hard-won dollars of single-disease-oriented voluntary agencies be spent on patient services or on lobbying to obtain a larger NIH budget, rather than on research? The report reviewed the portfolio of MS Society research programs, which it strongly supported.
Both recommendations reflected current trends that transcended research in multiple sclerosis. Gender-based differences in immune responses had recently been recognized as more important than previously understood, and the combination of unprecedented levels of medical school debt, low grant funding rates, and changes in the U. The review identified results from the British MS Society's funding of research in the previous decade, as an accounting of how effectively it had used its resources during that period and, also, as a basis for considering future strategies to support research.
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The IOM committee was asked to review current scientific knowledge and to recommend strategic plans for future research, including laboratory and clinical research. In developing research strategies for the future, the committee was asked to look beyond both national and disciplinary boundaries to identify new ideas and new techniques that can be enlisted in the fight against MS. The committee was also asked to consider the roles played by different types of organizations that sponsor MS research.
Private health organizations such as the MS Society, private firms, and the federal government each occupy different niches both in the scientific research community and for health care consumers or caregivers. The committee was not asked to evaluate the MS Society's research program or grant review process. As noted earlier in this chapter, that has been done before. Forming the study committee involved recruiting an intricate balance of a broad range of professional expertise and individual perspectives.
The foremost consideration was that all members be considered by their peers to be among the very best in their areas of expertise. A second consideration was to form a committee whose thinking was not limited to the well-established research strategies in MS, but nonetheless included the in-depth knowledge of past and present research in MS and related fields needed to provide a solid foundation upon which new ideas could be weighed.
Anyone currently in a policy-setting position at the MS Society was excluded from consideration. The committee included people whose primary field of expertise is research on multiple sclerosis and those who worked in other fields; it included clinicians and basic researchers; people from academe and industry; those with experience managing research in government and private foundations; and researchers from the United States, Canada, Britain, and Germany see Appendix A for committee.
The Institute of Medicine will review current knowledge about the cause and treatment of MS and will develop a strategic plan to guide future investments. The goal of the study is to identify the potentially most productive research strategies for the field of MS as a whole; in particular, to identify the resources and strategies from disciplines not generally considered to be involved in MS research, but that might nonetheless expand the intellectual and technological resources from which researchers might draw in the fight against MS.
The IOM will assemble a study committee of outstanding scientists and other experts from academia, industry, and other research and medical organizations that include health care practitioners, who are knowledgeable about the fields relevant to MS research, but whose careers are generally not focused on this disease. The committee will be charged with the following:. Assess the current status of progress against MS.
mHealth: app assessment for multiple sclerosis -- MEDICA - World Forum for Medicine
The review will describe what is known about the etiology, pathogenesis, and clinical management of MS, as well as identify the information most needed to understand the mechanisms underlying the cause and progression of MS. Studies funded from domestic and international sources National MS Society, the National Institutes of Health, industry, and other research organizations will be considered in the review.
Identify research areas and disciplines that have the greatest potential for the future of MS scientific progress, which will include: 1 identifying advances in related fields that might prove to be beneficial for the cure and treatment of MS, 2 exploring opportunities for innovations that have prospects for creating significant scientific and clinical advances, and 3 identifying areas that have not previously been involved in MS and might contribute new insights.
Consider strategies to facilitate application of new scientific findings to treatment protocols and to enhance communication of research advances to caregivers. Develop recommendations regarding the direction of future research investments to attract interest from researchers that have not previously focused on the disease and to draw some of the brightest young researchers to this field. Highlight the most effective role for the NMSS in contributing to the recommended strategies.
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Recommendations will consider the distinctive contributions that could be made by the NMSS in the context of total research supported by the NMSS, NIH, other domestic and international organizations, including private industry. Different ways of knowing MS were also represented on the committee: those of someone living with MS, clinicians who treat MS patients, and scientists at the cutting edge of research, ranging from the study of fundamental brain mechanisms to clinical trials of treatments for neurological disease.
The committee supplemented its expertise through a series of background papers and three workshops. The background papers were written for the committee by experts on the different complications of MS such as pain, fatigue, and bladder problems see Appendix B for the list of expert consultants. Each workshop was organized as a combined information-gathering and brainstorming session on one of the following themes: new technologies and research on the mechanism of disease in MS, new opportunities for the treatment of neurological disease, and research toward improving the quality of life for people with MS see Appendix C for a list of workshop participants.
To supplement the committee members' own experience treating MS patients, they also met with several people—some of whom have MS themselves—who work with MS patients in a variety of nonresearch settings, including nursing, outdoor adventures, and the Jimmie Heuga Center, an exercise and life-style management facility for people with MS. Among the important audiences for this report are the architects and developers of multiple sclerosis research programs.
The report covers a broad spectrum of MS research, ranging 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.
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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 for addressing the varied information needs of people with MS and for treating the fatigue and pain that so often accompany MS. Ultimately, however, this report is for people with MS. Thus, the report also attempts to provide a readable, comprehensive review of what is currently known about MS, what needs to be learned, and the promises that research holds in the near future.
Chapter 2 reviews what is known about the clinical and biological aspects of MS, including possible causes of the disease and the destructive mechanisms that leave the brain and spinal cord unable to perform their normal functions. It also reviews the research tools that hold the greatest promise to reveal those underlying disease mechanisms. Chapter 3 reviews what is known about the prevalence, causes, impact, and treatment of specific symptoms of MS such as fatigue, spasticity, and visual disturbances.
Chapter 4 focuses on the lives of people with MS and strategies for adapting to the illness. It also reviews the tools that are most important for research aimed at improving the lives of people with MS, specifically the tools that measure quality of life and functional status.
Chapter 5 looks forward and discusses research strategies and techniques that have the greatest potential to reveal new insights into the biology of the disease, insights that are likely to be crucial in the development of effective treatments. Chapter 6 also looks forward, in this case reviewing critical issues and research for developing specific therapeutic strategies, with an emphasis on disease-modifying therapies. This chapter includes a discussion of challenges inherent in designing appropriate clinical trials in MS research.
Chapter 7 discusses building and supporting the research enterprise necessary to facilitate the most effective research strategies for MS. Finally, Chapter 8 collates the key recommendations that emerge from discussions in the preceding chapters. The role of voluntary agencies in the funding of biomedical research.
N Engl J Med.