Rare disease registries: a call to action

Internal Medicine Journal

Volumn 47, Issue 9, 2017, Pages 1075-1079

  Lacaze, Paul ^a   Millis, Nicole ^b   Fookes, Megan ^b   Zurynski, Yvonne ^c,d   Jaffe, Adam ^e,f   Bellgard, Matthew ^g   Winship, Ingrid ^h,i   McNeil, John ^a   Bittles, Alan H ^g,j  

^a MONASH UNIVERSITY   (Australia)

^b Cancer Voices Australia   (Australia)

^c CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^d UNIVERSITY OF SYDNEY   (Australia)

^e UNIVERSITY OF NEW SOUTH WALES   (Australia)

^f SYDNEY CHILDREN'S HOSPITAL   (Australia)

^g MURDOCH UNIVERSITY   (Australia)

^h ROYAL MELBOURNE HOSPITAL   (Australia)

ⁱ UNIVERSITY OF MELBOURNE   (Australia)

^j EDITH COWAN UNIVERSITY   (Australia)

more..

Author keywords

clinical registries; genetics; rare disease; registries

Indexed keywords

ARTICLE; AUSTRALIA; COST EFFECTIVENESS ANALYSIS; CYSTIC FIBROSIS; DRUG SURVEILLANCE PROGRAM; ELECTRONIC HEALTH RECORD; ENGLAND; GENETIC VARIATION; GOVERNMENT; HUMAN; PATIENT ADVOCACY; PATIENT CARE; POPULATION RESEARCH; PRACTICE GUIDELINE; PREVALENCE; PRIORITY JOURNAL; QUALITY OF LIFE; RARE DISEASE; REIMBURSEMENT; TRANSLATIONAL RESEARCH; INFORMATION PROCESSING; PROCEDURES; REGISTER;

AUSTRALIA; DATA COLLECTION; HUMANS; RARE DISEASES; REGISTRIES; TRANSLATIONAL MEDICAL RESEARCH;

EID: 85029129900     PISSN: 14440903     EISSN: 14455994     Source Type: Journal    
DOI: 10.1111/imj.13528     Document Type: Article

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