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Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations

Crossref DOI link: https://doi.org/10.1186/s13023-025-03838-6

Published Online: 2025-07-01

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

Authors

Claessens, Zilke https://orcid.org/0000-0003-2895-1599
Vanneste, Alice

Van Isterdael, Charlotte

Verbeke, Charlotte

Wens, Io

Huys, Isabelle
Funding

Funding for this research was provided by:

FWO (1S52125N)

C3 funding, KU Leuven

Belgian Health Care Knowledge Centre

Belspo
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Text and Data Mining valid from 2025-07-01

Version of Record valid from 2025-07-01
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Article History

Received: 16 January 2025

Accepted: 26 May 2025

First Online: 1 July 2025

Declarations

:

: The protocol on the stakeholder consultations were approved by the Ethics Committee Research UZ/KU Leuven in Belgium (S67909). All participants in the stakeholder consultations provided their informed consent to participate.

: All participants in the stakeholder consultations were aware of publication of the results and gave their consent.

: The authors declare that they have no competing interests.

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