and to organize collection of scarce resources (for example, human tissue).
The committee recommends that the MS Society consider exploring less conventional approaches such as those tried by other health care foundations. The MS societies should consider leading an effort to identify and develop successful models of collaboration. Although these societies cannot fund many clinical trials, it might be able to work as a catalyst to facilitate more effective, far-reaching clinical trials, for example, by bringing together the right people.
This would also include the development of data registries that would apply to natural history studies and long-term therapeutic evaluations.
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.
This would include research on the instruments used to assess quality of life, employment issues, personal independence, and the identification of optimal models of caring for people with MS. Research in these areas has too often proceeded in parallel paths with little apparent recognition of the work of others. 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. Although each of these diseases has some unique features, for the most part, the research techniques, patients' needs, and even the investigators themselves overlap across different diseases, particularly chronic, debilitating diseases. Examples of such diseases include rheumatoid arthritis, diabetes, Parkinson's disease, Alzheimer's disease, and amyotrophic lateral sclerosis (ALS). Much of the research on quality-of-life issues for any of these diseases is likely to be relevant to people with MS. Indeed the development of partnerships among the related health care organizations should benefit a far greater number of patients than each could serve alone. Partnerships could take a variety of forms from collaborative development and funding of requests for proposals (RFPs) to collaborations in convening symposia and workshops.
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.