How to establish and sustain a disease registry: insights from a qualitative study of six disease registries in the UK

Abstract

Abstract Background The advent of new chronic conditions such as long COVID-19 raises the question of whether and, if so, how best to establish new disease registries for such conditions. Prompted by the potential need for a long COVID-19 registry, we examined experiences of existing UK disease registries to understand barriers and enablers to establishing and sustaining a register, and how these have changed over time. Methods We undertook semi-structured interviews between November 2022 and April 2023 with individuals representing six disease registries that collect individual-level longitudinal data on people diagnosed with a chronic condition. Results Registries examined were developed by a few individuals, usually clinicians, to gain a greater understanding of the disease. Patient voices were largely absent from initial agenda setting processes, but, over time, all registries sought to increase patient involvement. Securing long-term funding was cited as the biggest challenge; due to limited funds, one of the registries examined no longer actively recruits patients. Charities devoted to the diseases in question were key funders, though most registries also sought commercial opportunities. Inclusion on the NIHR Clinical Research Network Portfolio was also considered a vital resource to support recruitment and follow-up of participants. All registries have sought to minimise the primary data collected to reduce the burden on clinicians and patients, increasingly relying on linkage to other data sources. Several registries have developed consent procedures that enable participants to be contacted for additional data collection. In some cases, the initial patient consent and data sharing permissions obtained had limited the flexibility to adapt the registry to changing data needs. Finally, there was a need to foster buy-in from the community of patients and clinicians who provide and/or use the data. Conclusion 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.

Keywords

• Disease registry
• Chronic conditions
• Health research data and infrastructure
• Patient registry
• Long COVID-19