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

Ali, S.R.; Bryce, J.; Tan, L.E.; Hiort, O.; Pereira, A.M.; Akker, E.L.T. van den; Appelman-Dijkstra, N.M.; Bertherat, J.; Cools, M.; Dekkers, O.M.; Kodra, Y.; Persani, L.; Smyth, A.; Smythe, C.; Taruscio, D.; Ahmed, S.F.

doi:doi:10.3390/ijerph17238743

Persistent URL of this record https://hdl.handle.net/1887/3184723

View statistics

In Collections

This item can be found in the following collections:

Medicine / Leiden University Medical Centre (LUMC)

Ali, S.R.; Bryce, J.; Tan, L.E.; Hiort, O.; Pereira, A.M.; Akker, E.L.T. van den; ... ; Ahmed, S.F. (2020)

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

Article / Letter to editor

Rare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall aim of improving patient care. RD registries also have a fundamental role in supporting the work of clinical networks such as the European Reference Networks (ERNs) for rare diseases. With the recent expansion of RD registries, it has become even more essential to outline standards of good practice in relation to governance, infrastructure, documentation, training, audits and adopting the Findable, Accessible, Interoperable and Reusable (FAIR) data principles to maintain registries of high quality. For the purpose of this paper, we highlight vital aspects of data access and data governance policies for RD registries, using the European Registries for Rare Endocrine Conditions (EuRRECa) as...Show moreRare disease (RD) registries are important platforms that facilitate communication between health care professionals, patients and other members of the multidisciplinary team. RD registries enable data sharing and promotion of research and audits, often in an international setting, with the overall aim of improving patient care. RD registries also have a fundamental role in supporting the work of clinical networks such as the European Reference Networks (ERNs) for rare diseases. With the recent expansion of RD registries, it has become even more essential to outline standards of good practice in relation to governance, infrastructure, documentation, training, audits and adopting the Findable, Accessible, Interoperable and Reusable (FAIR) data principles to maintain registries of high quality. For the purpose of this paper, we highlight vital aspects of data access and data governance policies for RD registries, using the European Registries for Rare Endocrine Conditions (EuRRECa) as an example of a project that aims to promote good standards of practice for improving the quality of utilization of RD registries.Show less

registries

databases

European reference networks

endocrinology

rare diseases

rare conditions