GeneticsOrphanet Journal of Rare DiseasesPeer-reviewed
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…·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.
37 citations