Kathleen R. Bogart and Veronica L. Irvin; Orphanet Journal of Rare Diseases 201712:177 doi:10.1186/s13023-017-0730-1
Twenty-five to 30 million Americans live with a rare disease (RD) and share challenges unique to RD. The majority of research on RDs has focused on etiology, treatment and care, while the limited health-related quality of life (HRQL) research has been restricted to single RDs, small samples, or non-validated measures. This study reports HRQL among adults with diverse RDs, and compares their scores to those of the U.S. population and people with common chronic health conditions.
Monday, December 11, 2017
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