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Authors
Appelman-Dijkstra, Natasha M. https://orcid.org/0000-0001-5035-127X
Cherenko, Mariya
Clunie, Gavin P. R.
Funck-Brentano, Thomas
Grasemann, Corinna
Raimann, Adalbert
Lems, Willem F.
Cohen-Solal, Martine
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Article History
Received: 4 December 2024
Accepted: 14 June 2025
First Online: 1 July 2025
Declarations
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: The project complies with EU GDPR and was approved by the Information Governance authorities at the NHS Greater Glasgow & Clyde Health Board and the National Research Ethics Service in the UK (e-REC REC Reference 17/WS/0178; Core Registry REC Reference 18//WS/0205), and later at the Leiden University Medical Center (e-REC project ID 133036; Core Registry protocol nWMODIV2_2024018, project ID 130850). Informed written consent was obtained from all individual participants in the study.
: Not applicable.
: NMA-D: ECTS Rare bone Disease Action Group member, EuRREB coordinator and ERN BOND HCP representative, (ERN BOND and EuRR-Bone are funded by the European Union, project 101157116 (ERN BOND); within the framework of the EU4Health Programme 2021–2027.)
