A key objective of the UK CARDIO-IMID Partnership is to establish a national, real-world register of patients with IMIDs across the spectrum of cardiovascular risk and involvement to address the unmet needs in the management of people with IMIDs. Routine collection of clinical, imaging and other investigative and pathology data will provide a rich resource to better characterise clinical and subclinical cardiovascular involvement across different IMIDs; the pathophysiological sequence of events; identify biomarkers for risk stratification, early diagnosis and monitoring; and examine treatment effects and outcomes. This will serve as a platform for dedicated studies that evaluate new diagnostic tests and treatments.
There is also the opportunity for participants to include longitudinal (blood) samples and an extended Cardiac Magnetic Resonance (CMR) imaging protocol for those receiving CMR as part of NHS standard of care.
This registry will be supported by a data storage and analytical platform that will facilitate safe and collaborative use of data and future multi-centre research studies. The Registry is being built in collaboration with the Secure eResearch Platform (SeRP) and Secured Anonymised Information Linkage (SAIL) Databank arms of the University of Swansea and future data linkage will be supported by the BHF Data Science Centre.
Finally, this registry asks for consent to be recalled such that it will provide a cohort of patients that can be approached for other studies. The Registry offers the opportunity for it to be leveraged as a simplified, single-point access for industry to connect with the UK CARDIO-IMID space facilitating scaled investigation to test new diagnostics and therapies and provide better care.
If you would like to review a more detailed schematic of our Registry design, please reach out to the Partnership Manager at [email protected] to request access.
