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Expediting Patient-Oriented Research in Canada: Development of Myeloma Canada Research Network (MCRN)

Donna Reece

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Canadian Institutes of Health Research (CIHR)
Multiple myeloma is an incurable cancer of the bone and bone marrow. Considerable progress has been made in prolonging survival with newer drugs, but much work remains to be done. Myeloma is a chronic disease in which a patient's quality of life is often diminished by bone pain and possibly bony fractures, and virtually all patients still eventually succumb to this disease. Myeloma Canada is the only patient organization in Canada devoted exclusively to this disease; its four pillars are education, awareness, advocacy and research. Under Myeloma Canada's aegis, 38 hematologists and researchers from across Canada have united to form the Myeloma Canada Research Network to conduct trials considered high priority by myeloma patients. Two innovative multicentre myeloma trials have been completed or are in progress-an accomplishment that has established a track record for this organization. However, in order to transform the care of myeloma patients in this country, the MCRN now requires a formal and sustainable infrastructure with the capacity to perform multiple studies at the same time for different stages of the disease, develop strategies to match each person's disease biology with the best treatment ("personalized medicine"), identify better tests for monitoring the disease and speed entry and successful uptake of novel anti-myeloma drugs and strategies into the Canadian health system. The proposed structure of the MCRN, with its direct interfaces with Myeloma Canada at multiple levels, is designed to integrate the priorities of the people most affected by this disease--the patients and their caregivers-- into the overall direction of myeloma research and the design of specific research trials to meet these goals.

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