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Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?

In the field of disability research and advocacy, the notion of ‘cures’ is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those p...

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Autores principales: Honan, Ingrid, Finch‐Edmondson, Megan, Imms, Christine, Novak, Iona, Hogan, Amy, Clough, Shannon, Bonyhady, Bruce, McIntyre, Sarah, Elliott, Catherine, Wong, Shirley, Bink, Michael, Badawi, Nadia
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9290932/
https://www.ncbi.nlm.nih.gov/pubmed/34402053
http://dx.doi.org/10.1111/dmcn.15016
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author Honan, Ingrid
Finch‐Edmondson, Megan
Imms, Christine
Novak, Iona
Hogan, Amy
Clough, Shannon
Bonyhady, Bruce
McIntyre, Sarah
Elliott, Catherine
Wong, Shirley
Bink, Michael
Badawi, Nadia
author_facet Honan, Ingrid
Finch‐Edmondson, Megan
Imms, Christine
Novak, Iona
Hogan, Amy
Clough, Shannon
Bonyhady, Bruce
McIntyre, Sarah
Elliott, Catherine
Wong, Shirley
Bink, Michael
Badawi, Nadia
author_sort Honan, Ingrid
collection PubMed
description In the field of disability research and advocacy, the notion of ‘cures’ is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether ‘cures for CP’ is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of ‘cures for CP’ that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies.
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spelling pubmed-92909322022-07-20 Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s? Honan, Ingrid Finch‐Edmondson, Megan Imms, Christine Novak, Iona Hogan, Amy Clough, Shannon Bonyhady, Bruce McIntyre, Sarah Elliott, Catherine Wong, Shirley Bink, Michael Badawi, Nadia Dev Med Child Neurol Reviews In the field of disability research and advocacy, the notion of ‘cures’ is contentious. Cerebral palsy (CP) is no exception. In this narrative review, we combine perspectives gained during community consultation undertaken for the Australian and New Zealand Cerebral Palsy Strategy, 2020 with those published in the scientific and grey literature to understand whether ‘cures for CP’ is a reasonable and appropriate goal. We frame these perspectives through the lens of several ethical principles central to the discussion. These include maintaining hope while also being realistic, sensitivity to sharply different viewpoints amongst people with disability and their families, and responding to community priorities, societal attitudes, and identity. Through this exploration of the literature and perspectives, we arrived at a definition of ‘cures for CP’ that is pluralized and focuses on functional improvement and/or symptom reduction whilst still acknowledging the potential for neural repair/regeneration strategies. John Wiley and Sons Inc. 2021-08-17 2022-01 /pmc/articles/PMC9290932/ /pubmed/34402053 http://dx.doi.org/10.1111/dmcn.15016 Text en © 2021 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Reviews
Honan, Ingrid
Finch‐Edmondson, Megan
Imms, Christine
Novak, Iona
Hogan, Amy
Clough, Shannon
Bonyhady, Bruce
McIntyre, Sarah
Elliott, Catherine
Wong, Shirley
Bink, Michael
Badawi, Nadia
Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
title Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
title_full Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
title_fullStr Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
title_full_unstemmed Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
title_short Is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
title_sort is the search for cerebral palsy ‘cures’ a reasonable and appropriate goal in the 2020s?
topic Reviews
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9290932/
https://www.ncbi.nlm.nih.gov/pubmed/34402053
http://dx.doi.org/10.1111/dmcn.15016
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