Incorporating the patient perspective in the study of rare bone disease: insights from the osteogenesis imperfecta community.
T SwezeyB B ReeveT S HartM K FloorC M DollarA P GilliesLaura L TosiPublished in: Osteoporosis international : a journal established as result of cooperation between the European Foundation for Osteoporosis and the National Osteoporosis Foundation of the USA (2018)
This work will help guide the incorporation of PROs into the next phase of the BBDC Natural History Study of OI and underscores the importance of including PROs in the study of rare diseases.