Research output per year
Research output per year
Description
Additional file 2.. Complete challenge-solution matrix.
| Date made available | 14-Dec-2023 |
|---|---|
| Publisher | figshare |
Keywords on Datasets
- FAIR
- Stewardship
- Rare disease
- Patient registry
- Data steward
-
Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries
dos Santos Vieira, B., Bernabé, C. H., Zhang, S., Abaza, H., Benis, N., Cámara, A., Cornet, R., Le Cornec, C. M. A., ’t Hoen, P. A. C., Schaefer, F., van der Velde, K. J., Swertz, M. A., Wilkinson, M. D., Jacobsen, A. & Roos, M., 14-Dec-2022, In: Orphanet journal of rare diseases. 17, 1, 12 p., 436.Research output: Contribution to journal › Article › Academic › peer-review
Open AccessFile17 Citations (Scopus)118 Downloads (Pure) -
The de novo FAIRification process of a registry for vascular anomalies
Groenen, K. H. J., Jacobsen, A., Kersloot, M. G., dos Santos Vieira, B., van Enckevort, E., Kaliyaperumal, R., Arts, D. L., 't Hoen, P. A. C., Cornet, R., Roos, M. & Kool, L. S., 4-Sept-2021, In: Orphanet journal of rare diseases. 16, 1, 10 p., 376.Research output: Contribution to journal › Article › Academic › peer-review
Open AccessFile13 Citations (Scopus)83 Downloads (Pure) -
The case for open science: rare diseases
Rubinstein, Y. R., Robinson, P. N., Gahl, W. A., Avillach, P., Baynam, G., Cederroth, H., Goodwin, R. M., Groft, S. C., Hansson, M. G., Harris, N. L., Huser, V., Mascalzoni, D., McMurry, J. A., Might, M., Nellaker, C., Mons, B., Paltoo, D. N., Pevsner, J., Posada, M. & Rockett-Frase, A. P. & 5 others, , Oct-2020, In: JAMIA Open. 3, 3, p. 472-486 15 p.Research output: Contribution to journal › Review article › peer-review
Open AccessFile38 Citations (Scopus)77 Downloads (Pure)