Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism

Orphanet Journal of Rare Diseases

Volumn 12, Issue 1, 2017, Pages

  Badiu, Corin ^a   Bonomi, Marco ^b,c   Borshchevsky, Ivan ^d   Cools, Martine ^e   Craen, Margarita ^e   Ghervan, Cristina ^f   Hauschild, Michael ^g   Hershkovitz, Eli ^h   Hrabovszky, Erik ⁱ   Juul, Anders ^j   Kim, Soo Hyun ^k   Kumanov, Phillip ^l   Lecumberri, Beatriz ^m   Lemos, Manuel C ⁿ   Neocleous, Vassos ^o   Niedziela, Marek ^p   Djurdjevic, Sandra Pekic ^q   Persani, Luca ^b,c,r   Phan Hug, Franziska ^g   Pignatelli, Duarte ^s   Pitteloud, Nelly ^t   Popovic, Vera ^q   Quinton, Richard ^u   Skordis, Nicos ^v,w   Smith, Neil ^x   Stefanija, Magdalena Avbelj ^y   Xu, Cheng ^t   Young, Jacques ^z   Dwyer, Andrew A ^t   more..

^a CAROL DAVILA UNIVERSITY OF MEDICINE AND PHARMACY   (Romania)

^b UNIVERSITY OF MILAN   (Italy)

^c ISTITUTO AUXOLOGICO ITALIANO   (Italy)

^d Patient Advocacy Working Group and the International Medical Interpreters Association   (Russian Federation)

^e GHENT UNIVERSITY HOSPITAL   (Belgium)

^f IULIU HATIEGANU UNIVERSITY OF MEDICINE AND PHARMACY   (Romania)

^g Centre Hospitalier Universitaire Vaudois   (Switzerland)

^h BEN GURION UNIVERSITY OF THE NEGEV   (Israel)

ⁱ INSTITUTE OF EXPERIMENTAL MEDICINE   (Hungary)

^j Rigshospitalet   (Denmark)

^k ST GEORGE'S UNIVERSITY OF LONDON   (United Kingdom)

^l MEDICAL UNIVERSITY OF SOFIA   (Bulgaria)

^m UNIVERSIDAD AUTÓNOMA DE MADRID   (Spain)

ⁿ UNIVERSITY OF BEIRA INTERIOR   (Portugal)

^o CYPRUS INSTITUTE OF NEUROLOGY AND GENETICS   (Cyprus)

^p POZNAN UNIVERSITY OF MEDICAL SCIENCES   (Poland)

^q UNIVERSITY OF BELGRADE   (Serbia)

^r Determinants of Metabolism Research Laboratory   (Italy)

^s HOSPITAL DE SÃO JOÃO   (Portugal)

^t LAUSANNE UNIVERSITY HOSPITAL   (Switzerland)

^u NEWCASTLE UNIVERSITY   (United Kingdom)

^v Paedi Center for Specialized Pediatrics   (Cyprus)

^w UNIVERSITY OF NICOSIA MEDICAL SCHOOL   (Cyprus)

^x Patient Advocacy Working Group   (United Kingdom)

^y UNIVERSITY CHILDREN S HOSPITAL   (Slovenia)

^z BICÊTRE HOSPITAL   (France)

more..

Author keywords

Community based participatory research; Congenital hypogonadotropic hypogonadism; E health; Kallmann syndrome; Nursing; Patient education; Patient participation; Patient centered care; Rare diseases

Indexed keywords

ADAPTATION; ADULT; AGED; ARTICLE; CONGENITAL DISORDER; CONGENITAL HYPOGONADOTROPIC HYPOGONADISM; CULTURAL ANTHROPOLOGY; FEMALE; HEALTH LITERACY; HUMAN; HYPOGONADOTROPIC HYPOGONADISM; KALLMANN SYNDROME; MAJOR CLINICAL STUDY; MALE; PATIENT EDUCATION; PATIENT EDUCATION MATERIAL; RARE DISEASE; STATISTICS; THEMATIC ANALYSIS; ALGORITHM; HYPOGONADISM; NURSING; PROCEDURES;

ALGORITHMS; HEALTH LITERACY; HUMANS; HYPOGONADISM; KALLMANN SYNDROME; NURSING; PATIENT EDUCATION AS TOPIC; RARE DISEASES;

EID: 85015737361     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-017-0608-2     Document Type: Article

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