Measuring what matters to rare disease patients - Reflections on the work by the IRDiRC taskforce on patient-centered outcome measures

Orphanet Journal of Rare Diseases

Volumn 12, Issue 1, 2017, Pages

  Morel, Thomas ^a   Cano, Stefan J ^b  

^a UNIVERSITY OF LEUVEN   (Belgium)

^b Modus Outcomes   (United Kingdom)

Author keywords

Clinical outcome assessments; Mixed methods research; Patient centricity; Patient centered outcome measures; Patient focused drug development (PFDD); Patient relevant outcomes; Patient reported outcomes; Rare diseases; Rasch measurement theory

Indexed keywords

ARTICLE; DISEASE BURDEN; HEALTH CARE ORGANIZATION; HUMAN; INTERPERSONAL COMMUNICATION; MEDICAL RESEARCH; OUTCOME ASSESSMENT; PATIENT ATTITUDE; PATIENT CARE; PATIENT CENTERED OUTCOME MEASUREMENT; PATIENT PREFERENCE; PSYCHOMETRY; QUALITATIVE RESEARCH; QUANTITATIVE STUDY; RARE DISEASE; SAMPLE SIZE; ADVISORY COMMITTEE; DRUG DEVELOPMENT; PROCEDURES; STANDARDS;

ADVISORY COMMITTEES; DRUG DISCOVERY; HUMANS; PATIENT OUTCOME ASSESSMENT; PATIENT-CENTERED CARE; RARE DISEASES;

EID: 85032745478     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-017-0718-x     Document Type: Article

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