Multiple Sclerosis Current Status and Strategies for the Future (2001) / Chapter Skim
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Executive Summary
Executive Summary
Pages 1-16
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Advances on key fronts, such as improved ability to create images of the living brain and spinal cord, new understanding of the brain's capacity for repair, and an overall accelerated pace of new discoveries about the cellular machinery of the brain, have renewed the optimism of many investigators about the possibility of developing effective therapeutic strategies for MS patients. New therapeutic strategies, such as gene therapy, stem cell transplantation, and neuroprotection strategies, rising on the horizon have emerged from recent advances in these areas.
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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.
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. RECOMMENDATION 1: Research on the pathological changes underlying the natural course of MS should be emphasized, because it provides the key to predicting disease course in individual patients, understanding the physiological basis of MS, and a basis for developing improved therapeutic approaches.
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The critical importance of identifying rare families with monogenic variants of MS cannot be overstated; this approach has been extraordinarily fruitful in neurodegenerative diseases such as Alzheimer's disease and Parkinson's disease. RECOMMENDATION 4: Because the discovery of an MS pathogen would likely provide the single most important clue for identifying effective treatments, this search must remain a high priority, but should be conducted using powerful new and efficient methods.
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Characterization of mouse models of various dwarfing syndromes, cloning of mutated genes, and parallel comparative genetic mapping and cloning of genes for similar human syndromes have led to an understanding of various human dwarfing conditions.
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RECOMMENDATION 8: Strategies for protection and repair of neural cells, including the use of neuroprotective factors as well as stem cells, hold great promise for the treatment of MS and should be a major research priority. Specific neuroprotective strategies to be investigated include: elucidation of the pathways leading to cell death in the central nervous system; identification of neuroprotective and repair strategies that will reduce or .
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. MULTIPLE SCLEROSIS therapeutic strategies that can protect oligodendrocytes from immune attack; strategies to activate endogenous oligodendrocyte precursor cells to promote remyelination (endogenous stem cells)
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The committee noted that many of the pivotal MS clinical trials on diseasemodifying therapies were terminated early, usually because of predetermined stopping rules, and, thereby, lost unique opportunities to obtain critical data. Although it is not generally feasible for voluntary health organizations such as the National MS Society to lead their own clinical trials, they can and should continue to play an advisory in the design of large-scale clinical trials.
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Finally, functional status and quality of life are critical end points in measuring the effectiveness of therapy, both for clinical trials and for routine patient care. Clinical neurology should move toward adopting as a standard of care a concise measurement of health status that includes quality-of-life measures, as well as impairment and disability measures.
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Rather, the committee recommends that the MS Society work in partnership with people with MS to guide the development of specific research strategies that will identify the most effective approaches toward improving their everyday lives. A series of forums could provide the needed perspective to defining those research strategies and should include the following constituencies: patients and their families; health care providers; allied health professionals, such as physical therapists, occupational therapists, and social workers; health services researchers, including survey scientists and clinical epidemiologists; social scientists, including sociologists, anthropologists, and psychologists; and · representatives of organizations of patients with other disorders that present some of the same challenges faced by people with MS.
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Certain information is best imparted by a health care provider during a private, scheduled visit; other information is best gained in a group setting. Some information has to be processed and molded to fit individual needs, and this is often accomplished more effectively in the back-and-forth exchange of a group setting.
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This should be actively encouraged by organizing symposia at scientific meetings, such as those of the Society for Neuroscience where MS research has received relatively little attention. RECOMMENDATION 16: Programs to increase research efficiency should be developed, including collaborations to enable expensive large-scale projects (for example, clinical trials, genome screens)
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For example, many articles about the psychosocial aspects of MS are published in nursing, psychology, physiotherapy, and neuroscience journals, and yet they often fail to cite articles on the same topic published outside their professional disciplines. Because the health policy research field is relatively small and research funds are limited, partnerships should be developed among MS societies and with other health research organizations that target diseases that confront patients with similar challenges.
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One possible approach is that following a potentially credible claim implicating a particular pathogen in MS, a society could oversee a project whereby the investigator making the claim, as well as an expert in the particular pathogen, could review clinical samples. A similar approach could be taken in terms of other claims related to diagnosis or treatment of MS in situations in which a quick confirmation of the results would be important to MS patients or to the neurological and scientific community.
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16 MULTIPLE SCLEROSIS the immediate impact of the discoveries or spare investigators embarrassment should their data be incorrect.
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