title: Clinical research for neuropathies.
abstract: The National Institutes of Health (NIH) has a long-standing commitment to neuropathy research. From 2005-2009, the NIH has committed US $115 million each year. A collaborative effort between researchers and patients can accelerate the translation of pre-clinical discoveries into better treatments for neuropathy patients. Clinical trials are needed to test these new treatments, but they can only be implemented in a timely fashion if patients with neuropathies are willing to participate. This perspective focuses on the value of having various outlets for informing both the patients and the physicians about existing clinical research opportunities and on the potential benefit of establishing patient registries to help with trial recruitment. Once data have been collected, there is a need to broadly share the data in order to inform future trials, and a first step would be to harmonize data collection by using Common Data Elements (CDEs).
authors.affiliation: Office of Clinical Research, National Institute of Neurological Disorders and Stroke, 6001 Executive Blvd., Bethesda, MD 20892-9520, USA. petra.kaufman@nih.gov
authors.forename: Petra
authors.initials: P
authors.lastname: Kaufmann
mesh_terms: D035843:Biomedical Research / Q000191:economics / Q000458:organization & administration*; D003625:Data Collection; D006801:Humans; D009316:National Institutes of Health (U.S.); D010523:Peripheral Nervous System Diseases; D012107:Research Design; D014481:United States