Assessing Disease Experience across the Life Span for Individuals with Osteogenesis Imperfecta: Challenges and Opportunities for Patient-Reported Outcomes (PROs) Measurement
Laura Lowe Tosi, Marianne Floor, Christina M. Dollar, Austin P. Gillies, Tracy Smith Hart, David D Cuthbertson, Vernon Reid Sutton, Jeffrey P. Krischer
The paper evaluates the construct validity of PROMIS instruments in osteogenesis imperfecta (OI) and explores using a registry to recruit participants for health status surveys.
Orphanet Journal of Rare Diseases · Jan 29, 2019Peer-reviewedGenetics