Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions

Javaid, M.K., Mordenti, M., Boarini, M. et al. (6 more authors) (2021) Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions. Orphanet Journal of Rare Diseases, 16 (1). 463. ISSN 1750-1172

Abstract

Metadata

Authors/Creators:
  • Javaid, M.K.
  • Mordenti, M.
  • Boarini, M.
  • Sangiorgi, L.
  • Westerheim, I.
  • Alves, I.
  • Skarberg, R.T.
  • Appelman-Dijkstra, N.M.
  • Grasemann, C.
Copyright, Publisher and Additional Information: © The Author(s) 2021. Open Access: This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
Keywords: Rare bone and mineral conditions; Rare disease registries; Osteogenesis imperfecta; Survey; Natural History
Dates:
  • Accepted: 30 September 2021
  • Published (online): 3 November 2021
  • Published: 3 November 2021
Institution: The University of Sheffield
Academic Units: The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Department of Human Metabolism (Sheffield)
The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > Department of Oncology (Sheffield)
Depositing User: Symplectic Sheffield
Date Deposited: 04 Mar 2022 12:24
Last Modified: 04 Mar 2022 12:32
Status: Published
Publisher: BioMed Central
Refereed: Yes
Identification Number: https://doi.org/10.1186/s13023-021-02069-9

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