“Be an ambassador for change that you would like to see”: a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease-Reference-Cited by-同舟云学术

“Be an ambassador for change that you would like to see”: a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease

Published:2019-06-07 Issue:1 Volume:14 Page:
ISSN:1750-1172
Container-title:Orphanet Journal of Rare Diseases
language:en
Short-container-title:Orphanet J Rare Dis

Author:

Ambrosini Anna^ORCID, ,Quinlivan Ros,Sansone Valeria A.,Meijer Ingeborg,Schrijvers Guus,Tibben Aad,Padberg George,de Wit Maarten,Sterrenburg Ellen,Mejat Alexandre,Breukel Alexandra,Rataj Michal,Lochmüller Hanns,Willmann Raffaella

Publisher

Springer Science and Business Media LLC

Subject

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

Link

http://link.springer.com/content/pdf/10.1186/s13023-019-1103-8.pdf

Reference59 articles.

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3. Greenhalgh T, Jackson C, Shaw S, Janamian T. Achieving research impact through co-creation in community-based health services. Literature review and Case study. Milbank Q. 2016;94:392–429.

4. Carman KL, Workman TA. Engaging patients and consumers in research evidence: applying the conceptual model of patient and family engagement. Patient Educ Couns. 2017;100:25–9.

5. Mavris M, Le Cam Y. Involvement of patient organisations in research and development of orphan drugs for rare diseases in europe. Mol Syndromol. 2012;3:237–43.

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