IMPLEMENTING CLINICAL TRIALS FOR RARE DISEASES: THE IMPORTANCE OF REGISTRIES,NATURAL HISTORY DATASET

来源 :The 2nd International Rare Diseases Research Consortium Conf | 被引量 : 0次 | 上传用户:ciweiqiu
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Clinical trials are the critical penultimate step in translating discoveries into better treatments for patients.Planning and implementing such trials requires significant time and resources,and can be particularly challenging in rare diseases.Setting the stage for successful trial implementation requires effective ways to connect patients with research opportunities,which is often accomplished in partnership with patient organization and through contact registries.
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