Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review-Reference-Cited by-同舟云学术

Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review

Published:2017-12 Issue:1 Volume:12 Page:
ISSN:1750-1172
Container-title:Orphanet Journal of Rare Diseases
language:en
Short-container-title:Orphanet J Rare Dis

Author:

Young Andrea,Menon Devidas,Street Jackie,Al-Hertani Walla,Stafinski Tania

Funder

Canadian Institutes of Health Research

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics (clinical),General Medicine

Link

http://link.springer.com/content/pdf/10.1186/s13023-017-0738-6.pdf

Reference178 articles.

1. Douglas C, Wilcox E, Burgess M, Lynd L. Why orphan drug coverage reimbursement decision-making needs patient and public involvement. Health Policy. 2015;119:588–96.

2. Esmail L, Moore E, Rein A. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Effect Res. 2015;4:133-45.

3. Barello S, Graffigna G, Vegni E. Patient engagement as an emerging challenge for healthcare services: mapping the literature. Nurs Res Practice. 2012; doi: 10.1155/2012/905934 .

4. Report on Innovating Health: Public Engagement in Health Technology Assessments and Coverage Decisions. In: Canada's Public Policy Forum. 2011. http://www.ppforum.ca/sites/default/files/Innovating_Health_Final_Report_0.pdf . Accessed 9 Nov 2015.

5. Lee D, Wong B. An orphan drug framework (ODF) for Canada. J Popul Ther Clin Pharmacol. 2014;21:e42–6.

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