International Data Sharing and Rare Disease: The Importance of Ethics and Patient Involvement-Reference-Cited by-同舟云学术

International Data Sharing and Rare Disease: The Importance of Ethics and Patient Involvement

Published:2020-03-25 Issue: Volume: Page:
ISSN:
Container-title:Rare Diseases
language:
Short-container-title:

Author:

Thorogood Adrian

Publisher

IntechOpen

Link

http://www.intechopen.com/download/pdf/71101

Reference50 articles.

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2. Might M, Wilsey M. The shifting model in clinical diagnostics: How next-generation sequencing and families are altering the way rare diseases are discovered, studied, and treated. Genetics in Medicine. 2014;16(10):736-737

3. Wright CF, FitzPatrick DR, Firth HV. Paediatric genomics: Diagnosing rare disease in children. Nature Reviews Genetics. 2018;19(5):253-268

4. CADTH. Genome-wide sequencing: ethical considerations [Internet]. 12 November 2019. 37 p. Available from: https://www.cadth.ca/sites/default/files/hta-he/he0020-genome-wide-sequencing-ethical-considerations.pdf [cited: 17 December 2019]

5. National Institutes of Health. DRAFT NIH Policy for data management and sharing [Internet]. November 2019. 4 p. Available from: https://osp.od.nih.gov/wp-content/uploads/Draft_NIH_Policy_Data_Management_and_Sharing.pdf [cited: 17 December 2019]

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