The eurreca project as a model for data access and governance policies for rare disease registries that collect clinical outcomes

SR Ali; J Bryce; LE Tan; O Hiort; AM Pereira; Erica Akker; NM Appelman-Dijkstra; J Bertherat; M (Martine) Cools; OM Dekkers; Y Kodra; L Persani; A Smyth; C Smythe; D Taruscio; S Faisal Ahmed

doi:10.3390/ijerph17238743

The eurreca project as a model for data access and governance policies for rare disease registries that collect clinical outcomes

SR Ali
, J Bryce
, LE Tan
, O Hiort
, AM Pereira
, Erica Akker
, NM Appelman-Dijkstra
, J Bertherat
, M (Martine) Cools
, OM Dekkers
, Y Kodra
, L Persani
, A Smyth
, C Smythe
, D Taruscio
, S Faisal Ahmed

Pediatrics

Research output: Contribution to journal › Article › Academic › peer-review

21 Citations (Scopus)

51 Downloads (Pure)

Original language	English
Article number	8743
Pages (from-to)	1-12
Number of pages	12
Journal	International Journal of Environmental Research and Public Health
Volume	17
Issue number	23
DOIs	https://doi.org/10.3390/ijerph17238743
Publication status	Published - 2020

Research programs

EMC MM-01-54-01
EMC MM-03-24-01

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10.3390/ijerph17238743

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Cite this

Ali, SR., Bryce, J., Tan, LE., Hiort, O., Pereira, AM., Akker, E., Appelman-Dijkstra, NM., Bertherat, J., Cools, M., Dekkers, OM., Kodra, Y., Persani, L., Smyth, A., Smythe, C., Taruscio, D., & Ahmed, S. F. (2020). The eurreca project as a model for data access and governance policies for rare disease registries that collect clinical outcomes. International Journal of Environmental Research and Public Health, 17(23), 1-12. Article 8743. https://doi.org/10.3390/ijerph17238743

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Ali, SR, Bryce, J, Tan, LE, Hiort, O, Pereira, AM, Akker, E, Appelman-Dijkstra, NM, Bertherat, J, Cools, M, Dekkers, OM, Kodra, Y, Persani, L, Smyth, A, Smythe, C, Taruscio, D & Ahmed, SF 2020, 'The eurreca project as a model for data access and governance policies for rare disease registries that collect clinical outcomes', International Journal of Environmental Research and Public Health, vol. 17, no. 23, 8743, pp. 1-12. https://doi.org/10.3390/ijerph17238743

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T1 - The eurreca project as a model for data access and governance policies for rare disease registries that collect clinical outcomes

AU - Ali, SR

AU - Bryce, J

AU - Tan, LE

AU - Hiort, O

AU - Pereira, AM

AU - Akker, Erica

AU - Appelman-Dijkstra, NM

AU - Bertherat, J

AU - Cools, M (Martine)

AU - Dekkers, OM

AU - Kodra, Y

AU - Persani, L

AU - Smyth, A

AU - Smythe, C

AU - Taruscio, D

AU - Ahmed, S Faisal

PY - 2020

Y1 - 2020

U2 - 10.3390/ijerph17238743

DO - 10.3390/ijerph17238743

M3 - Article

C2 - 33255540

SN - 1661-7827

VL - 17

SP - 1

EP - 12

JO - International Journal of Environmental Research and Public Health

JF - International Journal of Environmental Research and Public Health

IS - 23

M1 - 8743

ER -