Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study

DOI: 10.1186/s13023-019-1004-x

Keywords: Patient reported outcomes, Patient-reported outcome measurement information system？ (PROMIS？), Health-related quality of life (HRQoL), Osteogenesis imperfecta, Rare disease, Registry, Pediatric outcomes data collection instrument (PODCI)

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Abstract:

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