%0 Journal Article
%T Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study
%A Austin P. Gillies
%A Christina M. Dollar
%A David D. Cuthbertson
%A Jeffrey P. Krischer
%A Laura L. Tosi
%A Marianne K. Floor
%A Members of the Brittle Bone Disease Consortium
%A Tracy S. Hart
%A V. Reid Sutton
%J Archive of "Orphanet Journal of Rare Diseases".
%D 2019
%R 10.1186/s13023-019-1004-x
%X The online version of this article (10.1186/s13023-019-1004-x) contains supplementary material, which is available to authorized users
%K Patient reported outcomes
%K Patient-reported outcome measurement information system£¿ (PROMIS£¿)
%K Health-related quality of life (HRQoL)
%K Osteogenesis imperfecta
%K Rare disease
%K Registry
%K Pediatric outcomes data collection instrument (PODCI)
%U https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6350324/