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Review
. 2022 Jan;64(1):49-55.
doi: 10.1111/dmcn.15016. Epub 2021 Aug 17.

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

Ingrid Honan  1 , Megan Finch-Edmondson  1 , Christine Imms  2 , Iona Novak  1 , Amy Hogan  3 , Shannon Clough  4 , Bruce Bonyhady  5 , Sarah McIntyre  1 , Catherine Elliott  6   7 , Shirley Wong  4 , Michael Bink  8 , Nadia Badawi  1   9
Affiliations
Review

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

Ingrid Honan et al. Dev Med Child Neurol. 2022 Jan.

Abstract
in English, Spanish, Portuguese

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.

En el campo de la investigación y la promoción de la discapacidad, la noción de "curas" es controvertida. Parálisis cerebral (PC) no es una excepción. En esta revisión narrativa, combinamos las perspectivas obtenidas durante consulta comunitaria realizada para la parálisis cerebral en Australia y Nueva Zelanda. Estrategia, revisión de publicaciones en el 2020 con en la literatura científica y gris para comprender si 'curas para PC' es un objetivo razonable y apropiado. Enmarcamos estas perspectivas a través de lente de varios principios éticos centrales para la discusión. Estos incluyen mantener la esperanza al mismo tiempo que es realista, la sensibilidad a puntos de vista muy diferentes entre las personas con discapacidad y sus familias, y responder a las prioridades de la comunidad, las actitudes sociales y la identidad. A través de esta exploración de la literatura y las perspectivas, llegamos a una definición de 'curas para la PC' que está pluralizada y se enfoca en la mejora funcional y / o en los síntomas. reducción sin dejar de reconocer el potencial de las estrategias de reparación / regeneración neural.

No campo da pesquisa e defesa da deficiência, a noção de “curas” é controversa. Cerebral paralisia (PC) não é exceção. Nesta revisão narrativa, combinamos perspectivas adquiridas durante consulta comunitária realizada para a Estratégia para a Paralisia Cerebral da Austrália e da Nova Zelândia, 2020 com as publicados na literatura científica e cinzenta para entender se 'curas para CP' são um objetivo razoável e apropriado. Nós enquadramos essas perspectivas através da lente de vários princípios éticos centrais para a discussão. Estes incluem manter a esperança ao mesmo tempo ser realista, sensibilidade a pontos de vista nitidamente diferentes entre pessoas com deficiência e suas famílias, e respondendo às prioridades da comunidade, atitudes sociais e identidade. Através desta exploração da literatura e perspectivas, chegamos a uma definição de ‘curas para PC’ que é pluralizada e foca na melhora funcional e/ou redução de sintomas, embora ainda reconhecendo o potencial para estratégias de reparo/regeneração neural.

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Conflict of interest statement

IN, MFE, IN, SM and NB are employed by Cerebral Palsy Alliance (CPA), CI is a Director of the Australasian Academy of Cerebral Palsy and Developmental Medicine (AusACPDM), AH is employed by The Cerebral Palsy Society of New Zealand (CP Society), and MB is employed by Ability First Australia (AFA). CPA, AusACPDM and AFA (via Cerebral Palsy Australia) provided financial and in‐kind support, and CP Society provided in‐kind support, for the development of the Australian and New Zealand Cerebral Palsy Strategy. At the time of writing, SC and SW were Collaboration Members with lived experience of cerebral palsy, or as a family member of someone with cerebral palsy, of The Australian and New Zealand Cerebral Palsy Strategy. They provided in‐kind support to the development of the Australian and New Zealand Cerebral Palsy Strategy.

Comment in

References

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