Cargando…
Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action
The proactive inclusion of patients in the design and execution of clinical studies has been an emerging focus for decades. Such participatory research helps to design studies better, by addressing relevant research questions and defining outcomes that matter to patients. Yet, much remains to be lea...
Autores principales: | , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
IOS Press
2022
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9198722/ https://www.ncbi.nlm.nih.gov/pubmed/35404289 http://dx.doi.org/10.3233/JPD-223190 |
_version_ | 1784727689447342080 |
---|---|
author | Meinders, Marjan J. Donnelly, Anne C. Sheehan, Margaret Bloem, Bastiaan R. |
author_facet | Meinders, Marjan J. Donnelly, Anne C. Sheehan, Margaret Bloem, Bastiaan R. |
author_sort | Meinders, Marjan J. |
collection | PubMed |
description | The proactive inclusion of patients in the design and execution of clinical studies has been an emerging focus for decades. Such participatory research helps to design studies better, by addressing relevant research questions and defining outcomes that matter to patients. Yet, much remains to be learned about the best methods and exact impacts of patient engagement in research in general, and more specifically, about the specific challenges that come with Parkinson’s disease. Here we present the lived experiences of patient researchers living with Parkinson’s disease, as a motivation for the value of their perspectives in research and as a call to action for empirical research on how to successfully include patient researchers. |
format | Online Article Text |
id | pubmed-9198722 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | IOS Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-91987222022-06-16 Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action Meinders, Marjan J. Donnelly, Anne C. Sheehan, Margaret Bloem, Bastiaan R. J Parkinsons Dis Short Communication The proactive inclusion of patients in the design and execution of clinical studies has been an emerging focus for decades. Such participatory research helps to design studies better, by addressing relevant research questions and defining outcomes that matter to patients. Yet, much remains to be learned about the best methods and exact impacts of patient engagement in research in general, and more specifically, about the specific challenges that come with Parkinson’s disease. Here we present the lived experiences of patient researchers living with Parkinson’s disease, as a motivation for the value of their perspectives in research and as a call to action for empirical research on how to successfully include patient researchers. IOS Press 2022-05-24 /pmc/articles/PMC9198722/ /pubmed/35404289 http://dx.doi.org/10.3233/JPD-223190 Text en © 2022 – The authors. Published by IOS Press https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Short Communication Meinders, Marjan J. Donnelly, Anne C. Sheehan, Margaret Bloem, Bastiaan R. Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action |
title | Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action |
title_full | Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action |
title_fullStr | Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action |
title_full_unstemmed | Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action |
title_short | Including People with Parkinson’s Disease in Clinical Study Design and Execution: A Call to Action |
title_sort | including people with parkinson’s disease in clinical study design and execution: a call to action |
topic | Short Communication |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9198722/ https://www.ncbi.nlm.nih.gov/pubmed/35404289 http://dx.doi.org/10.3233/JPD-223190 |
work_keys_str_mv | AT meindersmarjanj includingpeoplewithparkinsonsdiseaseinclinicalstudydesignandexecutionacalltoaction AT donnellyannec includingpeoplewithparkinsonsdiseaseinclinicalstudydesignandexecutionacalltoaction AT sheehanmargaret includingpeoplewithparkinsonsdiseaseinclinicalstudydesignandexecutionacalltoaction AT bloembastiaanr includingpeoplewithparkinsonsdiseaseinclinicalstudydesignandexecutionacalltoaction |