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

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

Abstract Background Rare diseases (RDs) are often neglected because they affect a small percentage of the population (6–8 %), which makes research and development of new therapies challenging processes. Easy access to high-quality samples and associated clinical data is therefore a key prerequisite...

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Bibliographic Details
Main Authors: Chiara Baldo, Lorena Casareto, Alessandra Renieri, Giuseppe Merla, Barbara Garavaglia, Stefano Goldwurm, Elena Pegoraro, Maurizio Moggio, Marina Mora, Luisa Politano, Luca Sangiorgi, Raffaella Mazzotti, Valeria Viotti, Ilaria Meloni, Maria Teresa Pellico, Chiara Barzaghi, Chiuhui Mary Wang, Lucia Monaco, Mirella Filocamo
Format: Article
Language:English
Published: BMC 2016-10-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Patient organisations
Rare diseases
Biobanking
Networking
Agreements
Sample and data centralisation
Online Access:http://link.springer.com/article/10.1186/s13023-016-0527-7

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http://link.springer.com/article/10.1186/s13023-016-0527-7

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