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INTRODUCTION

More than 50 invited experts representing international organizations supporting MS research participated in an April, 2001, workshop held in Washington D.C. to advance research recommended by the report, Multiple Sclerosis: Current Status and Strategies for the Future.1 That report identified promising areas of multiple sclerosis (MS) research based on a strategic analysis of the current state of knowledge. The report was written by the Institute of Medicine (IOM) Committee on MS Research Strategies.

The specific goals of the workshop, articulated by Dr. Richard B. Johnston, Chairman of the IOM Committee, were to disseminate information about the report, foster collaboration, and serve as a launch pad for implementation of the report's recommendations. In his opening remarks, Dr. Johnston remarked on the innovative nature of the workshop which, to his knowledge, was “the first time that a finished [IOM] report had been ... used to develop a workshop and, from that, to extend the report.”

Workshop Format

The workshop agenda was organized around formal presentations by Committee members, question-and-answer sessions, and breakout groups. The workshop began with an overview and discussion of the report's 18 recommendations ( Appendix A). Committee members ( Appendix B) provided background information and insights about the Committee's deliberations. Following their presentations and discussion in plenary session, three concurrent breakout sessions focused on a cluster of recommendations under each of these categories: disease mechanisms, disease management, and building and supporting the research enterprise (See Appendix C). Each breakout group was asked to consider:

    1. how particular recommendations might be implemented most effectively, and

    2. how the recommendations within each category might be prioritized.

Proposals from each breakout group were later reported back to the plenary session by an appointed rapporteur, followed by a general discussion of suggestions and conclusions made by the breakout groups.

This workshop summary presents the reports from each breakout group and summarizes the plenary session discussion. For clarity, the recommendations are grouped slightly differently from the grouping in the report (see box). In keeping with the written policies of the National Academy of Sciences, this workshop summary contains particular viewpoints attributed to individual participants or to groups of participants (including breakout groups), but does not contain statements about what “the workshop” or “all its participants” concluded. This summary is not a formal product of the IOM Committee on MS Research Strategies.

1 The report and the workshop of April 4–5, 2001, were funded by the National Multiple Sclerosis Society.



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Page 1 INTRODUCTION More than 50 invited experts representing international organizations supporting MS research participated in an April, 2001, workshop held in Washington D.C. to advance research recommended by the report, Multiple Sclerosis: Current Status and Strategies for the Future. 1 That report identified promising areas of multiple sclerosis (MS) research based on a strategic analysis of the current state of knowledge. The report was written by the Institute of Medicine (IOM) Committee on MS Research Strategies. The specific goals of the workshop, articulated by Dr. Richard B. Johnston, Chairman of the IOM Committee, were to disseminate information about the report, foster collaboration, and serve as a launch pad for implementation of the report's recommendations. In his opening remarks, Dr. Johnston remarked on the innovative nature of the workshop which, to his knowledge, was “the first time that a finished [IOM] report had been ... used to develop a workshop and, from that, to extend the report.” Workshop Format The workshop agenda was organized around formal presentations by Committee members, question-and-answer sessions, and breakout groups. The workshop began with an overview and discussion of the report's 18 recommendations ( Appendix A). Committee members ( Appendix B) provided background information and insights about the Committee's deliberations. Following their presentations and discussion in plenary session, three concurrent breakout sessions focused on a cluster of recommendations under each of these categories: disease mechanisms, disease management, and building and supporting the research enterprise (See Appendix C). Each breakout group was asked to consider: 1. how particular recommendations might be implemented most effectively, and 2. how the recommendations within each category might be prioritized. Proposals from each breakout group were later reported back to the plenary session by an appointed rapporteur, followed by a general discussion of suggestions and conclusions made by the breakout groups. This workshop summary presents the reports from each breakout group and summarizes the plenary session discussion. For clarity, the recommendations are grouped slightly differently from the grouping in the report (see box). In keeping with the written policies of the National Academy of Sciences, this workshop summary contains particular viewpoints attributed to individual participants or to groups of participants (including breakout groups), but does not contain statements about what “the workshop” or “all its participants” concluded. This summary is not a formal product of the IOM Committee on MS Research Strategies. 1 The report and the workshop of April 4–5, 2001, were funded by the National Multiple Sclerosis Society.

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Page 2 Recommendations for Future Research on Disease Mechanisms BREAKOUT GROUP A: Discussion Leaders, Jack Antel and Jesse Cedarbaum; Rapporteur, Robert Lisak 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. RECOMMENDATION 2: Research should be pursued to identify how neurons are damaged in MS, how this damage can be prevented, and how oligodendrocytes and astrocytes are involved in damage and repair processes. RECOMMENDATION 3: The genes that underlie genetic susceptibility to MS should be identified, because genetic information offers such a powerful tool to elucidate fundamental disease processes and prognosis, and to develop new therapeutic approaches. 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. RECOMMENDATION 5: Research to identify the cascade of immune system events that culminates in the destruction of myelin should remain a priority. RECOMMENDATION 6: The power of neuroimaging as a tool for basic research and for clinical assessment should be taken advantage of more extensively. RECOMMENDATION 7: Animal models should be developed that more faithfully mirror the features of MS and permit the analysis of how specific molecules and cells contribute to the disease process. Recommendations for Future Research on Disease Management BREAKOUT GROUP B: Discussion Leaders, Stephen Hauser and Sharon Juliano; Rapporteur, Henry Claman Therapeutics 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. RECOMMENDATION 9: New, more effective therapeutic approaches to symptomatic management should be pursued, including those directed at neuropathic pain and sensory disturbances. RECOMMENDATION 10: In the absence of any fully effective therapies, integrated approaches for the delivery of currently available therapeutic agents should be investigated. RECOMMENDATION 11: Better strategies should be developed to extract the maximum possible scientific value from MS clinical trials.

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Page 3 Quality of Life RECOMMENDATION 12: Health status assessment methods for people with MS should be further developed and validated to increase the reliability and power of clinical trials and to improve individual patient care. RECOMMENDATION 13: Research strategies aimed at improving the ability of people with MS to adapt and function should be developed in partnership with research practitioners, managers, and patients; toward this end, a series of forums to identify the most pressing needs experienced by people with MS should be convened. RECOMMENDATION 17: New strategies should be developed to encourage more integration among the different disciplines that support and conduct research relevant to improving the quality of life for people with MS. Recommendations for Building and Supporting the Research Enterprise BREAKOUT GROUP C: Discussion Leader, Ray Roos; Rapporteur, Christine Purdy RECOMMENDATION 14: New researchers should be actively recruited to work in MS, and training programs should be designed to foster productive interactions with established investigators both within and outside the MS research community. RECOMMENDATION 15: Concerted efforts should be made to stimulate enduring interdisciplinary collaborations among researchers in the biological and non-biological sciences relevant to MS and to recruit researchers from other fields into MS research. RECOMMENDATION 16: Programs to increase research efficiency should be developed, including collaborations to enable expensive large-scale projects (for example, clinical trials, genome screens) and to organize collection of scarce resources (for example, human tissue). RECOMMENDATION 18: To protect against investing research resources on false leads, there should be an organizational structure to promote efficient testing of new claims for MS pathogens and disease markers.