1 Title Assessing Disease Experience across the Life Span for Individuals with Osteogenesis Imperfecta: Challenges and Opportunities for Patient-Reported Outcomes (PROs) Measurement Authors Laura L. Tosi 1 (MD) [email protected] Marianne K. Floor 1 (MD, MPH) [email protected] Christina M. Dollar 1 (BS) [email protected] Austin P. Gillies 1 (BA) [email protected] Members of the Brittle Bone Disease Consortium* Tracy S. Hart 2 (BA) [email protected] David Cuthbertson 3 (MS) [email protected] V. Reid Sutton 4,5 (MD) [email protected] Jeffrey P. Krischer 3 (PhD) [email protected] 1. Bone Health Program, Children’s National Health System, Washington, DC USA 2. Osteogenesis Imperfecta Foundation, Gaithersburg, MD USA 3. College of Medicine, University of South Florida, Tampa, Florida USA 4. Department of Molecular and Human Genetics, Baylor College of Medicine, Houston, Texas, USA 5. Texas Children’s Hospital, Houston, Texas USA * Members of the Brittle Bone Disease Consortium: Brendan Lee 4,5 [email protected] . CC-BY-NC-ND 4.0 International license under a not certified by peer review) is the author/funder, who has granted bioRxiv a license to display the preprint in perpetuity. It is made available The copyright holder for this preprint (which was this version posted September 20, 2018. ; https://doi.org/10.1101/418251 doi: bioRxiv preprint
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