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‘We are the engine’: a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability

Crossref DOI link: https://doi.org/10.1186/s13023-025-03673-9

Published Online: 2025-04-10

Update policy: https://doi.org/10.1007/springer_crossmark_policy

Authors

Klein Haneveld, Mirthe Jasmijn

de Mortier, Chloé Aymée

Hugon, Anne

Cornel, Martina Cornelia

Gaasterland, Charlotte Maria Wilhelmina

van Eeghen, Agnies Marguerite https://orcid.org/0000-0001-8149-8645
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Text and Data Mining valid from 2025-04-10

Version of Record valid from 2025-04-10
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Article History

Received: 20 September 2023

Accepted: 19 March 2025

First Online: 10 April 2025

Declarations

:

: On 8 December 2022, the Medical Ethics Review Committee AMC declared that the Dutch Medical Research Involving Human Subjects Act (WMO) does not apply to this study and that official ethical approval is not required. All participants provided oral informed consent.

: Not applicable.

: The authors declare that they have no competing interests.

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