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tee of the MS Society is slated to consider the pros and cons of creating a clinical trials network. Similar discussions are underway in Europe, according to Dr. Thompson. There currently are networks for Parkinson's disease and several other neurological disorders. One of the advantages of a clinical trials network, according to several participants, is to provide a mechanism for academic medical centers to organize and facilitate trials funded by government or the pharmaceutical industry. Through its collective expertise, the network can set the terms of protocols, including setting of standards for data collection and access to data. The disadvantages, according to some participants familiar with other networks, is that pharmaceutical companies may not be pleased with the terms of participation and may turn instead to clinical investigators outside the network who have less expertise. Other problems are that a network may not be flexible enough and that it may slow down, instead of facilitate, patient recruitment when several studies are conducted in parallel.

Protecting Against False Leads

The IOM Committee was concerned about the amount of time and resources spent on verifying what turned out to be false leads about the causes of MS, according to Dr. Raymond Roos, a Committee member. He observed that because of the years spent unsuccessfully tracking down at least 15 different pathogens, the committee wanted to provide “an infrastructure and strategy to test the validity” of claims regarding pathogens, as well as other claims about diagnosis and treatment.

Ms. Purdy summed up the breakout group's nearly unanimous rejection of the recommendation: “There was no desire to be the police officer for science,” she said. Expanding on the group's rationale, Dr. Fred Lublin said that no single group could assign itself the task or has the competence to refute evidence with extremely complicated assays. Instead, the group adopted the view of “scientific Darwinism”— namely, that “good ideas will rise to the top and bad ideas will sink.” The group did not feel that people should be appointed to oversee claims because it was “presumptive and likely to fail,” said Dr. Lublin.

In further discussion Mr. Richard Slifka of the National MS Society noted that “whether we like it or not the MS Society in some ways does” organize efforts to verify claims. “But for the MS society to appoint itself as the policeman of science” is not “an appropriate role for our organization,” he added. Dr. Johnston reflected that the committee's recommendation was not directed at the National MS Society but was intended for the MS community.

CLOSING REMARKS

Dr. Celia Brosnan echoed a sentiment voiced by many of the participants throughout the workshop when she commented, “how valuable it has been to have people from so many different walks of life together in the same room. I think that this is a fairly unique opportunity, especially for discussions that bridge the government funding and private foundations.”

In his concluding remarks, Dr. Johnston observed how impressed he was with the terrific discussion at the



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Page 13tee of the MS Society is slated to consider the pros and cons of creating a clinical trials network. Similar discussions are underway in Europe, according to Dr. Thompson. There currently are networks for Parkinson's disease and several other neurological disorders. One of the advantages of a clinical trials network, according to several participants, is to provide a mechanism for academic medical centers to organize and facilitate trials funded by government or the pharmaceutical industry. Through its collective expertise, the network can set the terms of protocols, including setting of standards for data collection and access to data. The disadvantages, according to some participants familiar with other networks, is that pharmaceutical companies may not be pleased with the terms of participation and may turn instead to clinical investigators outside the network who have less expertise. Other problems are that a network may not be flexible enough and that it may slow down, instead of facilitate, patient recruitment when several studies are conducted in parallel. Protecting Against False Leads The IOM Committee was concerned about the amount of time and resources spent on verifying what turned out to be false leads about the causes of MS, according to Dr. Raymond Roos, a Committee member. He observed that because of the years spent unsuccessfully tracking down at least 15 different pathogens, the committee wanted to provide “an infrastructure and strategy to test the validity” of claims regarding pathogens, as well as other claims about diagnosis and treatment. Ms. Purdy summed up the breakout group's nearly unanimous rejection of the recommendation: “There was no desire to be the police officer for science,” she said. Expanding on the group's rationale, Dr. Fred Lublin said that no single group could assign itself the task or has the competence to refute evidence with extremely complicated assays. Instead, the group adopted the view of “scientific Darwinism”— namely, that “good ideas will rise to the top and bad ideas will sink.” The group did not feel that people should be appointed to oversee claims because it was “presumptive and likely to fail,” said Dr. Lublin. In further discussion Mr. Richard Slifka of the National MS Society noted that “whether we like it or not the MS Society in some ways does” organize efforts to verify claims. “But for the MS society to appoint itself as the policeman of science” is not “an appropriate role for our organization,” he added. Dr. Johnston reflected that the committee's recommendation was not directed at the National MS Society but was intended for the MS community. CLOSING REMARKS Dr. Celia Brosnan echoed a sentiment voiced by many of the participants throughout the workshop when she commented, “how valuable it has been to have people from so many different walks of life together in the same room. I think that this is a fairly unique opportunity, especially for discussions that bridge the government funding and private foundations.” In his concluding remarks, Dr. Johnston observed how impressed he was with the terrific discussion at the

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Page 14workshop and expressed the hope that the workshop would foster collaborations between the Society and other funding agencies with a similar commitments to MS research. And, finally, he applauded the efforts of the leadership of the National MS Society to encourage creativity and vision in pursuing their mission.