DataLoch Heart Disease Registry: improving support for cardiovascular research
13/05/2025
Launching in May 2025, the DataLoch Heart Disease Registry will accelerate cardiovascular research while preserving the security of the data. We have developed this registry through closely collaborating with clinicians and researchers and it is supported by a British Heart Foundation Research Excellence Award to the University of Edinburgh.
Overview of the DataLoch Heart Disease Registry
The DataLoch Heart Disease Registry focusses on a range of cardiovascular conditions, including acute and chronic coronary syndromes, heart failure, atrial fibrillation, valvular heart disease, as well as the role that diagnostic testing and treatment play in patient outcomes.
The initial release includes data on more than 160,000 occasions where people visited Emergency Departments with suspected acute coronary syndromes (possible heart attack). The registry will be augmented over time to include specialised datasets, such as electrocardiographic (ECG) images and voltage signals, and clinically adjudicated data. This adjudication will mean data have been reviewed by a clinician for accuracy and modified where needed to improve quality. This is particularly useful for those seeking gold-standard, accurate data for designing AI solutions.
To our knowledge, this is the first registry of consecutive patients undergoing evaluation with a possible heart attack: those with and those without a confirmed diagnosis. Among other objectives, the registry will support the design of new diagnostic strategies, research into the effectiveness of treatment pathways, and the development and validation of new clinical decision-support tools that harness machine learning.
The ambition of the registry is to enhance support for health care professionals and ultimately improve patient experiences and outcomes.
Image
Bar graph of cardiac troponin testing to diagnose heart attacks in the Emergency Department across three hospitals in NHS Lothian, 2014 – 2024. Line graph indicates the rate of heart attack per 1,000 acute events evaluated.
Early learning from the registry
A recent study based on data within the DataLoch Heart Disease Registry demonstrated that the electronic Frailty Index (eFI) was an important predictor of those at highest risk of death following heart attack. Automatically calculating eFI through linked primary care data offers a low-cost method of identifying patients who are at risk at the point of presentation to hospital, providing an opportunity to tailor their heart attack care.
The first step for researchers is to register for an account through our website and provide some basic details such as their organisation and contact email address: register for an account
Once registered, researchers can find the DataLoch Heart Disease Registry in our Metadata Catalogue, which offers more detailed definitions of the data that are potentially available. For access to the data, a full DataLoch application must be completed and discussed with the DataLoch team prior to submission through our usual approval processes.
Selecting data
We have created a bespoke and simplified data-selection form for our Heart Disease Registry, which is available through our Metadata Catalogue. Researchers only need to select their cohort of interest, as well as the periods for which data should cover.
Collaborating with registry specialists
For researchers seeking additional support or clinical expertise to assist with the development of their plans, the team behind the registry’s development is keen to collaborate. Our key contacts include Professor Nick Mills, Dr Atul Anand and Dr Alexander Thurston (all University of Edinburgh) and Franz Gruber and Sara Hatam (both DataLoch). Full contact details are provided within our Metadata Catalogue.
Development of the registry
The development of the DataLoch Heart Disease Registry was a two-year endeavour funded by the British Heart Foundation (Grant number: CH/F/21/90010).
We wish to acknowledge the leadership and guidance of Professor Nick Mills, Dr Atul Anand, Dr Alexander Thurston, Dr Dorien Kimenai, and Dr Ryan Wereski from the British Heart Foundation Centre for Cardiovascular Science in the creation of this registry.
Further DataLoch developments
The DataLoch Heart Disease Registry is just one of our enhancements in May 2025. In our most recent update, we have streamlined the process for selecting laboratory tests data sourced from the TrakCare system, as well as making NHS Lothian hospital inpatient prescriptions data available for research for the first time.
Key DataLoch enhancements – November 202301/11/2023
Since our last update, we have been working hard to improve data quality in several areas for the benefit of innovative research and NHS service management. In addition, new data are available, including GP visit data and patient journeys through hospitals. While for our Respiratory Registry, we have added Asthma and Wheeze cohorts.
Key DataLoch enhancements – November 202301/11/2023
Since our last update, we have been working hard to improve data quality in several areas for the benefit of innovative research and NHS service management. In addition, new data are available, including GP visit data and patient journeys through hospitals. While for our Respiratory Registry, we have added Asthma and Wheeze cohorts.
