The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience.

Lalout N, Wilkinson MD, Wandrei D, Tassoni A, Atalaia A, Prieto M, Camara A, Quemada E, Franken M, Jonker AH, Paliouras G, Siminiuc S, Carta C, Dos Santos Vieira B, Roos M, Kaliyaperumal R, Evangelista T, 't Hoen PAC, Vroom E.

Open source

DOI: 10.1177/22143602251382969
Published: 2025-10-01
Container: J Neuromuscul Dis
Publisher: Not recorded
Open access: yes

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Cite this work

BibTeX

@article{allodium:10.1177/22143602251382969,
  title = {The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience.},
  author = {Lalout N and  Wilkinson MD and  Wandrei D and  Tassoni A and  Atalaia A and  Prieto M and  Camara A and  Quemada E and  Franken M and  Jonker AH and  Paliouras G and  Siminiuc S and  Carta C and  Dos Santos Vieira B and  Roos M and  Kaliyaperumal R and  Evangelista T and  't Hoen PAC and  Vroom E.},
  year = {2026},
  journal = {J Neuromuscul Dis},
  doi = {10.1177/22143602251382969},
  url = {https://doi.org/10.1177/22143602251382969}
}

RIS

TY  - JOUR
TI  - The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience.
AU  - Lalout N
AU  -  Wilkinson MD
AU  -  Wandrei D
AU  -  Tassoni A
AU  -  Atalaia A
AU  -  Prieto M
AU  -  Camara A
AU  -  Quemada E
AU  -  Franken M
AU  -  Jonker AH
AU  -  Paliouras G
AU  -  Siminiuc S
AU  -  Carta C
AU  -  Dos Santos Vieira B
AU  -  Roos M
AU  -  Kaliyaperumal R
AU  -  Evangelista T
AU  -  't Hoen PAC
AU  -  Vroom E.
PY  - 2026
JO  - J Neuromuscul Dis
DO  - 10.1177/22143602251382969
UR  - https://doi.org/10.1177/22143602251382969
ER  -

APA

N, L., MD, W., D, W., A, T., A, A., M, P., A, C., E, Q., M, F., AH, J., G, P., S, S., C, C., B, D. S. V., M, R., R, K., T, E., PAC, '. H., & E., V. (2026). The FAIR journey of a patient-driven registry: Reflections and practical solutions from the Duchenne Data Platform FAIRification experience.. J Neuromuscul Dis. https://doi.org/10.1177/22143602251382969

Source records

europe-pmc · retrieved 2026-09-25T08:42:41.778Z