Rouleau / Wallace / Naarden / Groft / Washington DC / Washington / D.C. / Blumen / Indianapolis / /
Company
Gould / Neuro-QOL Lower Extremity Function Item Bank / ACS / PROMIS Physical Function Item Bank / Kramer AE / Renenstrief Institute Inc. / The National Academies Press / /
Country
Netherlands / United States / /
Facility
University of New Mexico’s Human Research Protections Office / PRISM Library / OPMD clinic / Institute of Medicine / University of New Mexico / University of New Mexico Health Sciences Center / MS The University of New Mexico School / Regenstrief Institute / /
National Institute of Health / LOINC / NIH office of Rare Diseases Research Standard / University of New Mexico School of Medicine / office of Management and Budget / University of New Mexico Health Sciences Center / NIH office of Rare Diseases Research Patient Registry Standard / University of New Mexico’s Human Research Protections office / International Organization for Standardization 3166-1-alpha-2 / Common Data Elements Steering Committee / NIH office of Rare Diseases Research / University of New Mexico / RxNORM / /
Person
Creating / WC / Sydney Swallow / Van Engelen / Shamsi Daneshvari / Van Der Sluijs / Sarah Youssof / Van Der Maarel / Philip J. Kroth / / /
PoliticalEvent
general race / /
Position
investigator / minimum common registry model / King / Registrar / Major / /
ProvinceOrState
Quebec / New Mexico / Manitoba / South Carolina / California / Georgia / /
The NIH Office of Rare Diseases Research Patient Registry Standard: A Report from the University of New Mexico’s Oculopharyngeal Muscular Dystrophy Patient Registry Shamsi Daneshvari, PhD, Sarah Youssof, MD, Philip J.