TY - JOUR
T1 - The eurreca project as a model for data access and governance policies for rare disease registries that collect clinical outcomes
AU - Ali, Salma R.
AU - Bryce, Jillian
AU - Tan, Li En
AU - Hiort, Olaf
AU - Pereira, Alberto M.
AU - van den Akker, Erica L.T.
AU - Appelman-Dijkstra, Natasha M.
AU - Bertherat, Jerome
AU - Cools, Martine
AU - Dekkers, Olaf M.
AU - Kodra, Yllka
AU - Persani, Luca
AU - Smyth, Arelene
AU - Smythe, Christopher
AU - Taruscio, Domenica
AU - Faisal Ahmed, S.
N1 - Funding Information:
S.F.A., J.B., M.C., O.M.D., O.H., L.P. are supported by the European Union?s Health Programme (2014?2020) on the EuRRECa project ?777215/EuRRECa?. S.F.A. and N.A.-D. are supported by the European Union?s Health Programme (2014?2020) on the EuRR-Bone project ?946831/EuRR-Bone?. A.M.P. is supported by the European Union?s Health Programme (2014?2020) on the Endo-ERN project (739527/Endo-ERN). (2017?2022).
Publisher Copyright:
© 2020 by the authors. Licensee MDPI, Basel, Switzerland.
Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.
PY - 2020/12/1
Y1 - 2020/12/1
N2 - 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 an example of a project that aims to promote good standards of practice for improving the quality of utilization of RD registries.
AB - 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 an example of a project that aims to promote good standards of practice for improving the quality of utilization of RD registries.
UR - http://www.scopus.com/inward/record.url?scp=85096563907&partnerID=8YFLogxK
U2 - 10.3390/ijerph17238743
DO - 10.3390/ijerph17238743
M3 - Scientific review articles
C2 - 33255540
AN - SCOPUS:85096563907
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 -
