Article

Assessing Disease Experience across the Life Span for Individuals with Osteogenesis Imperfecta: Challenges and Opportunities for Patient-Reported Outcomes (PROs) Measurement

2018-09-20

Abstract excerpt

<h4>ABSTRACT</h4> <h4>Background</h4> Patient reported outcome (PRO) information is crucial for establishing better patient-provider communication, improving shared decision making between clinicians and patients, and assessing patient responses to therapeutic interventions and increasing satisfaction with care. We used the Brittle Bones Disease Consortium (BBDC) Contact Registry for People with OI, managed by t...

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Literature Corpus work: c65e505b-6a1c-5d56-9f09-9727105516f2
DOI: 10.1101/418251

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