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A practical framework to approach the development and evaluation of patient registries for rare diseases

Crossref DOI link: https://doi.org/10.1186/s13023-026-04270-0

Published Online: 2026-02-24

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

Authors

Vaishnaw, Maya S

Richesson, Rachel https://orcid.org/0000-0003-0279-7036
License Information

Text and Data Mining valid from 2026-02-24

Version of Record valid from 2026-03-30
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Article History

Received: 11 December 2024

Accepted: 9 February 2026

First Online: 24 February 2026

Declarations

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: Not applicable.

: Not applicable.

: Not applicable.