How to establish and sustain a disease registry: insights from a qualitative study of six disease registries in the UK
We identified six key considerations when establishing a sustainable disease registry: (1) include a diverse set of stakeholders; (2) involve patients at every stage; (3) collect a core data set for all participants; (4) ensure the data system is flexible and interoperable with the wider data landscape; (5) anticipate changing data needs over time; and (6) identify financial opportunities to sustain the registry's activities for the long term.
Authors
- Edmund Stubbs (ORCID: https://orcid.org/0000-0003-1464-8361)
- Raphael Wittenberg (ORCID: https://orcid.org/0000-0003-3096-2721)
- Nicholas Mays (ORCID: https://orcid.org/0000-0001-9808-8466)
- Josephine Exley (ORCID: https://orcid.org/0000-0002-6501-0854)
Institutions
- London School of Hygiene & Tropical Medicine (GB)
- London School of Economics and Political Science (GB)
Publication Details
- Journal
- BMC Medical Informatics and Decision Making
- Published
- 2024-11-27
- DOI
- https://doi.org/10.1186/s12911-024-02775-x
- Citations
- 5
- Primary Topic
- Health Systems, Economic Evaluations, Quality of Life
- Type
- article
- Field-Weighted Citation Impact
- 5.65
Funders
- National Institute for Health and Care Research
- Department of Health and Social Care