The alliance between genetic biobanks and patient organisations: the experience of the telethon network of genetic biobanks

Orphanet Journal of Rare Diseases

Volumn 11, Issue 1, 2016, Pages 1-8

  Baldo, Chiara ^a   Casareto, Lorena ^b   Renieri, Alessandra ^c   Merla, Giuseppe ^d   Garavaglia, Barbara ^e   Goldwurm, Stefano ^f   Pegoraro, Elena ^g   Moggio, Maurizio ^h   Mora, Marina ^e   Politano, Luisa ⁱ   Sangiorgi, Luca ^j   Mazzotti, Raffaella ^b   Viotti, Valeria ^a   Meloni, Ilaria ^c   Pellico, Maria Teresa ^d   Barzaghi, Chiara ^e   Wang, Chiuhui Mary ^k   Monaco, Lucia ^k   Filocamo, Mirella ^b  

^a GALLIERA HOSPITAL   (Italy)

^b G GASLINI INSTITUTE   (Italy)

^c UNIVERSITY OF SIENA   (Italy)

^d CASA SOLLIEVO DELLA SOFFERENZA HOSPITAL   (Italy)

^e DEPARTMENT OF NEUROSURGERY   (Italy)

^f ISTITUTO ORTOPEDICO GAETANO PINI   (Italy)

^g UNIVERSITY HOSPITAL OF PADOVA   (Italy)

^h UNIVERSITY OF MILAN   (Italy)

ⁱ SECOND UNIVERSITY OF NAPLES   (Italy)

^j RIZZOLI ORTHOPAEDIC INSTITUTE   (Italy)

^k FONDAZIONE TELETHON   (Italy)

more..

Author keywords

Agreements; Biobanking; Networking; Patient involvement; Patient organisations; Rare diseases; Research; Sample and data centralisation

Indexed keywords

ARTICLE; AWARENESS; BIOBANK; GENETIC DISORDER; HEALTH SERVICE; HUMAN; PATIENT ORGANIZATION; PATIENT PARTICIPATION; RARE DISEASE; TELETHON NETWORK OF GENETIC BIOBANK; TRUST; MEDICAL RESEARCH;

BIOLOGICAL SPECIMEN BANKS; BIOMEDICAL RESEARCH; HUMANS; RARE DISEASES;

EID: 84992220762     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-016-0527-7     Document Type: Article

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