Natural History, Trial Readiness and Gene Discovery: Advances in Patient Registries for Neuromuscular Disease.

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The International Rare Diseases Research Consortium: Policies and Guidelines to maximize impact.Position Statement: Sharing of Clinical Research Data in Spinal Muscular Atrophy to Accelerate Research and Improve Outcomes for Patients.

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Natural History, Trial Readiness and Gene Discovery: Advances in Patient Registries for Neuromuscular Disease.

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2017 nî lūn-bûn

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2017年の論文

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2017年学术文章

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2017年学术文章

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2017年学术文章

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2017年學術文章

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2017年學術文章

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Natural History, Trial Readine ...... ies for Neuromuscular Disease.

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Natural History, Trial Readine ...... ies for Neuromuscular Disease.

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Natural History, Trial Readine ...... ies for Neuromuscular Disease.

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Natural History, Trial Readine ...... ies for Neuromuscular Disease.

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Natural History, Trial Readine ...... ies for Neuromuscular Disease.

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Natural History, Trial Readine ...... ies for Neuromuscular Disease.

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Agata Robertson

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Electronic health records: new opportunities for clinical research

Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.

The Human Phenotype Ontology in 2017

The FAIR Guiding Principles for scientific data management and stewardship

What can Duchenne Connect teach us about treating Duchenne muscular dystrophy?

The TREAT-NMD advisory committee for therapeutics (TACT): an innovative de-risking model to foster orphan drug development

Assessment of PRO label claims granted by the FDA as compared to the EMA (2006-2010)

Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: "translating" the translational

Online self-report data for duchenne muscular dystrophy confirms natural history and can be used to assess for therapeutic benefits

International Charter of principles for sharing bio-specimens and data

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97-124

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scholarly article

review article

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10.1007/978-3-319-67144-4_5

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English

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Hanns Lochmüller

Rachel Thompson

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2017-01-01T00:00:00Z

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29214567

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data sharing

Natural History, Trial Readiness and Gene Discovery: Advances in Patient Registries for Neuromuscular Disease.

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P2860

P2860

Natural History, Trial Readiness and Gene Discovery: Advances in Patient Registries for Neuromuscular Disease.

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