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

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

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http://www.wikidata.org/entity/Q31069543
Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.New Recommendation on Biological Materials Could Hamper Muscular Dystrophy Research.Your DNA, Your Say.Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation.Natural History, Trial Readiness and Gene Discovery: Advances in Patient Registries for Neuromuscular Disease.Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.Improved Diagnosis and Care for Rare Diseases through Implementation of Precision Public Health Framework.Progress in Rare Diseases Research 2010-2016: An IRDiRC Perspective.Society and personal genome data.'Quality in, quality out', a stepwise approach to EBM for rare diseases promoted by MEN1
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'You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research

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http://www.wikidata.org/entity/Q31069543
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2016 nî lūn-bûn
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2016 թուականի Ապրիլին հրատարակուած գիտական յօդուած
@hyw
2016 թվականի ապրիլին հրատարակված գիտական հոդված
@hy
2016年の論文
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2016年論文
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2016年論文
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2016年論文
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2016年論文
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2016年論文
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2016年论文
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'You should at least ask'. The ...... sharing for genomics research
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P2093
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P2888
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P433
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