Design of NORA, the National Osteoporosis Risk Assessment Program: a longitudinal US registry of postmenopausal women.

Abstract

NORA is an observational registry of postmenopausal US women with periodic collection of event and treatment data that will create a database including several hundred thousand subjects. It will utilize peripheral and central measurements of bone density and relate these to other risk factors, treatment patterns, and the natural history of osteoporosis. Initiated in the fall of 1997, the registry will be open to women throughout the United States who agree to complete baseline and on-going surveys. The database created by NORA will provide a resource that is unmatched in size and scope in the medical field and will allow for future research in a number of areas including patient outcomes, types of follow-up employed in clinical practice, diagnostic cost modelling, and osteoporosis therapy use (type, patient compliance, persistence and satisfaction). In addition, upon approval by the Steering Committee, women enrolled in the registry may be randomly selected to receive additional educational materials or questionnaires on a variety of topics of interest to specific researchers.