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Review
. 2020 Nov 25;17(23):8743.
doi: 10.3390/ijerph17238743.

The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

Salma R Ali  1   2 , Jillian Bryce  2 , Li En Tan  1 , Olaf Hiort  3 , Alberto M Pereira  4 , Erica L T van den Akker  5   6 , Natasha M Appelman-Dijkstra  4 , Jerome Bertherat  7 , Martine Cools  8   9 , Olaf M Dekkers  4   10 , Yllka Kodra  11 , Luca Persani  12   13 , Arelene Smyth  2 , Christopher Smythe  2 , Domenica Taruscio  11 , S Faisal Ahmed  1   2   4
Affiliations
Review

The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

Salma R Ali et al. Int J Environ Res Public Health. .

Abstract

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.

Keywords: European reference networks; databases; endocrinology; rare conditions; rare diseases; registries.

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Conflict of interest statement

The authors declare no conflict of interest.

Figures

Figure 1
Figure 1
Key principles of governance of a registry.
Figure 2
Figure 2
Data Flow within the European Registries for Rare Endocrine Conditions (EuRRECa) Core Registry.
Figure 3
Figure 3
Data flow within the e-Reporting of Rare Conditions (e-REC) platform.
Figure 4
Figure 4
EuRRECa data access committee approval process.
See this image and copyright information in PMC

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