Searchable abstracts of presentations at key conferences on calcified tissues

ba0006p029 | (1) | ICCBH2017

Web-based surveys using Patient-Reported Outcome Measurement Information System (PROMIS) instruments allow documentation of important components of the disease experience among individuals with Osteogenesis Imperfecta

Tosi Laura , Floor Marianne , Holland Rosalie , Goerlich Cara , Hart Tracy , Cuthbertson David , Sutton V Reid , Krischer Jeffrey

Objectives: Two important goals of the Rare Diseases Clinical Research Network Brittle Bone Disorders Consortium (RDCRN BBD) are i) to perform collaborative clinical research in brittle bone disorders including a longitudinal observational study driven by genotypic association and ii) to explore use of the PROMIS tool to provide valid quality of life (QOL) measures in individuals with Osteogenesis Imperfecta (OI). This work has been motivated by the fact that all current outco...