The ethical framework for performing research with rare inherited neurometabolic disease patients

European Journal of Pediatrics

Volumn 176, Issue 3, 2017, Pages 395-405

  Giannuzzi, Viviana ^a   Devlieger, Hugo ^b   Margari, Lucia ^c   Odlind, Viveca Lena ^d   Ragab, Lamis ^e   Bellettato, Cinzia Maria ^f   D’Avanzo, Francesca ^f   Lampe, Christina ^f,g   Cassis, Linda ^h   Cortès Saladelafont, Elisenda ^h   Cazorla, Ángels Garcia ^h   Barić, Ivo ^i,j   Cvitanović Šojat, Ljerka ^j   Fumić, Ksenija ⁱ   Dali, Christine I ^k   Bartoloni, Franco ^a   Bonifazi, Fedele ^a   Scarpa, Maurizio ^f,g   Ceci, Adriana ^a  

^a Fondazione per la Ricerca Farmacologica Gianni Benzi onlus   (Italy)

^b UNIVERSITY OF LEUVEN   (Belgium)

^c UNIVERSITY OF BARI   (Italy)

^d UPPSALA UNIVERSITY   (Sweden)

^e CAIRO UNIVERSITY   (Egypt)

^f Brains for Brain Foundation   (Italy)

^g Horst Schmidt Klinik   (Germany)

^h CENTRO DE INVESTIGACIÓN BIOMÉDICA EN RED DE ENFERMEDADES RARAS CIBERER   (Spain)

ⁱ KBC Zagreb   (Croatia)

^j UNIVERSITY OF ZAGREB   (Croatia)

^k Rigshospitalet   (Denmark)

more..

Author keywords

Clinical research; Ethics; Genetic disease; Paediatric; Rare

Indexed keywords

ARTICLE; CHILD; CLINICAL DECISION MAKING; CLINICAL GENETICS; CLINICAL RESEARCH; CLINICAL TRIAL (TOPIC); EUROPE; GENETIC DISORDER; GOOD CLINICAL PRACTICE; HUMAN; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; LEGAL SERVICE; METABOLIC DISORDER; NEUROLOGIC DISEASE; PRIORITY JOURNAL; RARE DISEASE; RESEARCH ETHICS; ETHICS; EUROPEAN UNION; LEGISLATION AND JURISPRUDENCE; MEDICAL RESEARCH;

BIOMEDICAL RESEARCH; CHILD; CLINICAL TRIALS AS TOPIC; EUROPE; EUROPEAN UNION; HUMANS; INFORMED CONSENT; METABOLIC DISEASES; NERVOUS SYSTEM DISEASES; RARE DISEASES;

EID: 85009469035     PISSN: 03406199     EISSN: 14321076     Source Type: Journal    
DOI: 10.1007/s00431-017-2852-9     Document Type: Article

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