The European Cystic Fibrosis Society Patient Registry: Valuable lessons learned on how to sustain a disease registry

Orphanet Journal of Rare Diseases

Volumn 9, Issue 1, 2014, Pages

  Viviani, Laura ^a   Zolin, Anna ^a   Mehta, Anil ^b   Olesen, Hanne Vebert ^c  

^a UNIVERSITY OF MILAN   (Italy)

^b UNIVERSITY OF DUNDEE   (United Kingdom)

^c AARHUS UNIVERSITY HOSPITAL   (Denmark)

Author keywords

Cystic fibrosis; Database; Disease registry; Patient registry

Indexed keywords

ACCESS TO INFORMATION; ARTICLE; COMPUTER PROGRAM; CONFIDENTIALITY; CYSTIC FIBROSIS; DATA BASE; DATA QUALITY CONTROL; DISEASE CLASSIFICATION; DISEASE REGISTRY; DNA DETERMINATION; FEEDBACK SYSTEM; FUNDING; HEALTH CARE COST; HEALTH CARE MANAGEMENT; HEALTH CARE ORGANIZATION; HUMAN; INFECTION; INFORMATION PROCESSING; MARKUP LANGUAGE; MEDICAL RESEARCH; MISSING DATA HANDLING; MOTIVATION; PATIENT REFERRAL; PEER REVIEW; PRACTICE GUIDELINE; PSEUDOMONAS AERUGINOSA; PSEUDOMONAS INFECTION; PUBLICATION; QUALITY CONTROL; RESOURCE ALLOCATION; SPUTUM CULTURE; SWEAT TEST; COST BENEFIT ANALYSIS; INFORMATION DISSEMINATION; MAJOR CLINICAL STUDY; PATIENT INFORMATION; RARE DISEASE; REFERENCE VALUE;

CYSTIC FIBROSIS; DATA COLLECTION; EUROPE; HUMANS; REGISTRIES;

EID: 84903393482     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/1750-1172-9-81     Document Type: Article

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