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Open Access Green as soon as Postprint is submitted to ZB.
The role of biobanking in rare diseases: European consensus expert group report.
Biopreserv. Biobank. 7, 155-156 (2009)
Biobanking is of high importance for research in rare diseases. There are >6,000 rare diseases with at least 30 million people affected in the European Union (EU). The European Commission (EC) has prioritized rare diseases in recent health and research programs. The rarity and diversity of rare diseases and their associated biomaterials harbor specific challenges and opportunities for biobanking requiring transnational collaboration and harmonization. Small collections or even individual samples may be extremely precious for research. Importantly, most rare disease biobanks work through the active participation of patients and patient organizations, and share benefits with them. This article gives recommendations related to rare disease biobanking reflecting consensus of an expert working group of the Biobank and Biomolecular Research Infrastructure program at a meeting in Munich on December 17-18, 2008.
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Publication type
Article: Journal article
Document type
Other: News Item
ISSN (print) / ISBN
1947-5535
e-ISSN
1947-5543
Journal
Biopreservation and Biobanking
Quellenangaben
Volume: 7,
Issue: 3,
Pages: 155-156
Publisher
Mary Ann Liebert
Publishing Place
New Rochelle, NY
Non-patent literature
Publications
Reviewing status
Peer reviewed
Institute(s)
Institute of Human Genetics (IHG)