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Improving the informed consent process in international collaborative rare disease research: effective consent for effective research
The increased international sharing of data in research consortia and the introduction of new technologies for sequencing challenge the informed consent (IC) process, adding complexities that require coordination between research centres worldwide. Rare disease consortia present special challenges s...
Autores principales: | Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Nature Publishing Group
2016
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4989211/ https://www.ncbi.nlm.nih.gov/pubmed/26860059 http://dx.doi.org/10.1038/ejhg.2016.2 |
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