‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research-Reference-Cited by-同舟云学术

‘You should at least ask’. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research

Published:2016-04-06 Issue:10 Volume:24 Page:1403-1408
ISSN:1018-4813
Container-title:European Journal of Human Genetics
language:en
Short-container-title:Eur J Hum Genet

Author:

McCormack Pauline^ORCID,Kole Anna,Gainotti Sabina^ORCID,Mascalzoni Deborah^ORCID,Molster Caron,Lochmüller Hanns,Woods Simon

Publisher

Springer Science and Business Media LLC

Subject

Genetics(clinical),Genetics

Link

http://www.nature.com/articles/ejhg201630.pdf

Reference39 articles.

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3. McCormack P, Woods S, Aartsma-Rus A et al: Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: “translating” the translational. PLoS Curr 2013; e-pub ahead of print 10 January 2013; doi:10.1371/currents.md.f90b49429fa814bd26c5b22b13d773ec.

4. Forrest CB, Bartek RJ, Rubinstein Y, Groft SC : The case for a global rare-diseases registry. Lancet 2011; 377: 1057–1059.

5. Bladen CL, Rafferty K, Straub V et al: The TREAT‐NMD Duchenne Muscular Dystrophy Registries: conception, design, and utilization by industry and academia. Hum Mutat 2013; 34: 1449–1457.

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