Patient and family engagement in the development of core outcome sets for two rare chronic diseases in children

Patient and family engagement in the development of core outcome sets for two rare chronic diseases in children

Plain English summary Core outcome sets (COS) are lists of outcomes agreed upon by a group of people to be measured and reported in studies about certain diseases and populations. Core outcomes are meant to represent what is useful to study from the perspectives of health care providers, researchers...

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Bibliographic Details
Main Authors: Shelley M. Vanderhout, Maureen Smith, Nicole Pallone, Kylie Tingley, Michael Pugliese, Pranesh Chakraborty, Sylvia Stockler, Martin Offringa, Nancy Butcher, Stuart G. Nicholls, Beth K. Potter
Format: Article
Language:English
Published: BMC 2021-09-01
Series:Research Involvement and Engagement
Subjects:
Core outcome sets
Medium-chain acyl-CoA dehydrogenase deficiency
Phenylketonuria
Patient engagement
Consensus
Online Access:https://doi.org/10.1186/s40900-021-00304-y

Internet

https://doi.org/10.1186/s40900-021-00304-y

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