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

Salma R. Ali, Jillian Bryce, Li En Tan, Olaf Hiort, Alberto M. Pereira, Erica L.T. van den Akker, Natasha M. Appelman-Dijkstra, Jerome Bertherat, Martine Cools, Olaf M. Dekkers, Yllka Kodra, Luca Persani, Arelene Smyth, Christopher Smythe, Domenica Taruscio, S. Faisal Ahmed^*

^*Corresponding author for this work