9 July 2026 – 1 March 2028

Advancing Care Trajectories: Deep phenotyping and precision therapeutics in Atrial Fibrillation patient cohorts to enhance bleeding and cardiovascular risk stratification and stroke prevention strategies

Atrial fibrillation (AF) is a common heart condition that increases the risk of stroke. If AF is detected and treated early, this risk can be reduced. This project will use real-world health data to understand how people with AF are diagnosed, treated and cared for, and to explore differences in care by age, gender and ethnicity, as well as the impact of the COVID-19 pandemic on AF care.

Project ID: SDE_EE_PROJ_A0032

Contracting Organisation: Swansea University

Sponsor Organisation: Swansea University

Status: Live - Data in use

Atrial Fibrillation (AF) is a common heart condition which is known by irregular contractions in the upper chambers of the heart resulting in five to seven times higher risk of stroke. Stroke is one of the leading causes of death and long-term disability worldwide, affecting more than 12 million people each year and placing a huge burden on individuals, families, and healthcare systems. Many strokes could be prevented with better detection and treatment of underlying risk factors, one of the most important being AF. The irregular heartbeat of AF patients makes it harder for the heart to pump blood properly. As a result, blood can sometimes collect and form clots. If a clot travels to the brain, it can cause a stroke. People with AF are about five times more likely to have a stroke than those without it. Fortunately, strokes caused by AF can often be prevented. One of the main treatments is the use of anticoagulants (AC), sometimes called “blood thinners”, which help stop clots from forming. However, these medicines also increase the risk of bleeding, so it’s important that they are used carefully and appropriately. Doctors follow guidelines to decide who should get these treatments, based on each person’s risk of stroke and bleeding. This research project aims to better understand how people with AF are diagnosed, treated, and cared for using real-world data from across the health system. The important questions we want to answer are: Are people with AF getting the right AC treatment at the right time? Are there differences in care between groups, such as by age, gender, or ethnicity? How was AF care affected during the COVID-19 pandemic, and has it recovered since? How well are stroke, bleeding and dementia outcomes being managed in people receiving or not receiving anticoagulants?

Project details

Project ID

SDE_EE_PROJ_A0032

Project start date

9 July 2026

Project end date

1 March 2028

Team

Lead applicant:

Dr Fatemeh Torabi

Senior Data Scientist

Dementias Platform UK Data Portal, Swansea University

Project team:

Name	Job title	Organisation
Dr Fatemeh Torabi	Senior Data Scientist	Dementias Platform UK Data Portal, Swansea University

About the project

Date of countersigned contract

24 June 2026

Health Research Classification System (HRCS) Category

Cardiovascular

Is this project a multiple-SDE project?

Is Eastern SDE the lead SDE?

Not applicable

Name of SDE parties

Eastern England SDE

Patient and public involvement and engagement

Are patients involved?

We will be working closely with the NIHR Cambridge BRC coordinators at the CUH NHS Foundation Trust to bring together the expertise and resources that builds the direct patient input pathway into our research programme. We are specifically interested to understand if definition of critical states as defined in our multi-state modelling are in alignment of what means critical to AF patients and their families and carers. The PPIE activity will continue throughout all stages with quarterly round tables, bi-monthly focus groups and involving PPIE representatives in all major monthly research meetings. Further engagement with patients with AF in each regional TRE will be coordinated through the Public Engagement in Data Research Initiative (PEDRI), led by Samaira Khan. Throughout the project, we will hold bi-monthly focus groups with people living with AF, carers, and public contributors to co-design study materials, interpret findings in the context of lived experience, and ensure transparency and trust in the use of health data. PPIE representatives will also take part in regular research team meetings to help shape priorities, outputs, and dissemination strategies

How will the results be published?

The results of this project will be disseminated through a coordinated communication plan that engages academic, clinical, and public audiences. Findings will be published in peer-reviewed journals and presented at national and international conferences, alongside policy-focused summaries shared with NIHR, NHS, and SDE stakeholders. We will work closely with the NIHR Cambridge BRC communications team to produce plain-language summaries, press releases, and social-media updates that highlight the implications for improving atrial fibrillation (AF) care and safe use of electronic health records in research

Public benefit statement

In the long run, this research will help to improve national guidelines, reduce health inequalities, and ensure that more people get the care they need. For example, if we find that some patients are missing out on anticoagulants, this can be addressed through targeted policies or better decision-making tools. If earlier diagnosis leads to better outcomes, we can work to shorten delays in care. By learning from the health records, we hope to reduce preventable strokes and improve outcomes for millions of people living with AF, both now and in the future.

Data

Data variables required

• Admission date • Discharge date • List of Diagnoses during stay. Diagnosis code (AF, stroke, systemic embolism, TIA, major bleeding, Dementia) • Any existing diagnosis records in secondary care records • Diagnosis code description (if exists within the same table or Reference table) • Date of diagnosis • Prescribed medication date • Prescribed medication code • Prescribed medication code description (if exists within the same table or Reference table) • Date of death • Primary cause of death • Week of birth • patient demographics data including age, sex, ethnicity

Criteria

Inclusion Criteria: All individuals aged 18 years and over with a confirmed AF diagnosis or a hospitalisation record for Stroke in their primary care or secondary care records. Where more than one record exists, the earliest record date will be the first diagnosis point. Records will be monitored from the study start date of 1st January 2000 or the earliest possible date in EoE SDE up to 31st December 2024.