Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study

Health Policy

Volumn 108, Issue 1, 2012, Pages 19-26

  Linertová, Renata ^a,b   Serrano Aguilar, Pedro ^b,c   Posada de la Paz, Manuel ^d   Hens Pérez, Manuel ^d   Kanavos, Panos ^e   Taruscio, Domenica ^f   Schieppati, Arrigo ^g   Stefanov, Rumen ^h   Péntek, Márta ⁱ   Delgado, Claudia ^b   Graf von der Schulenburg, Johann Matthias ^j   Persson, Ulf ^k   Chevreul, Karine ^l   Fattore, Giovanni ^m   Worbes Cerezo, Melany ⁿ   Sefton, Mark ^o   López Bastida, Julio ^a,b,p  

^a HOSPITAL UNIVERSITARIO DE GRAN CANARIA DR NEGRÍN   (Spain)

^b REDISSEC ^*  (Spain)

^c Evaluation and Planning Service at Canary Islands Health Service   (Spain)

^d Ministry of Science and Innovation   (Spain)

^e LONDON SCHOOL OF ECONOMICS   (United Kingdom)

^f ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^g MARIO NEGRI INSTITUTE FOR PHARMACOLOGICAL RESEARCH   (Italy)

^h Bulgarian Association for Promotion of Education and Science   (Bulgaria)

ⁱ Centre for Public Affairs Studies Foundation   (Hungary)

^j LEIBNIZ UNIVERSITY HANNOVER   (Germany)

^k SWEDISH INSTITUTE FOR HEALTH ECONOMICS   (Sweden)

^l UNIVERSITÉ PARIS EST CRÉTEIL   (France)

^m BOCCONI UNIVERSITY   (Italy)

ⁿ CIBER EPIDEMIOLOGÍA Y SALUD PÚBLICA CIBERESP   (Spain)

^o Biomedred   (Spain)

^p UNIVERSITY OF CASTILLA LA MANCHA   (Spain)

more..

Author keywords

Burden of illness; Delphi approach; Health related quality of life; Rare diseases

Indexed keywords

ARTICLE; CLINICAL EFFECTIVENESS; CONSENSUS DEVELOPMENT; CYSTIC FIBROSIS; DELPHI STUDY; DUCHENNE MUSCULAR DYSTROPHY; EPIDERMOLYSIS BULLOSA; FRAGILE X SYNDROME; HEALTH CARE AVAILABILITY; HEALTH CARE NEED; HEALTH CARE SURVEY; HEMOPHILIA; HISTIOCYTOSIS; JUVENILE RHEUMATOID ARTHRITIS; MUCOPOLYSACCHARIDOSIS; PILOT STUDY; PRADER WILLI SYNDROME; PREVALENCE; RARE DISEASE; SCLERODERMA;

COST OF ILLNESS; DELPHI TECHNIQUE; EUROPE; HUMANS; PILOT PROJECTS; QUALITY OF LIFE; RARE DISEASES;

EID: 84867336987     PISSN: 01688510     EISSN: 18726054     Source Type: Journal    
DOI: 10.1016/j.healthpol.2012.08.001     Document Type: Article

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