National study launches to improve understanding of heart disease in pregnancy

A major new national study led by researchers at Imperial's National Heart and Lung Institute aims to transform understanding of heart disease in pregnancy, the leading cause of maternal death in the UK.

Heart disease accounts for more than one third of pregnancy-related maternal deaths and is a growing cause of serious complications for mothers and babies. Yet evidence remains limited, in part because most studies are small and based in specialist centres. 

The PREG-HEART (PREGnancy, HEART Health and Cardiovascular Disease) study will create the first UK-wide, direct-to-participant research platform dedicated to heart health in pregnancy. The study is open to pregnant women across the UK, including those diagnosed with a heart condition before or during pregnancy, as well as women without known heart disease. 

Bringing research directly to women 

Unlike traditional hospital-based studies, PREG-HEART allows participants to enrol online and take part from home. Women can join in just a few minutes using a secure digital platform, designed in partnership with women who have lived experience of heart disease in pregnancy. 

By enabling participation regardless of location, the study aims to improve access to research and build a large, representative dataset that reflects the diversity of women affected by maternal heart disease. 

The research team is also working with maternity units serving diverse communities and trusted community organisations to reach women from Black and other minority backgrounds, who experience poorer maternal and neonatal outcomes. 

Addressing a critical evidence gap 

Heart disease affects around 2% of pregnant women, yet current understanding of risk, diagnosis and outcomes remains limited. PREG-HEART will allow researchers to collect health information and, with consent, link this to long-term NHS records, supporting follow-up beyond pregnancy. 

The study brings together expertise in cardiology, obstetrics, epidemiology, midwifery, genetics and patient engagement, and will provide a platform for future clinical trials and studies focused on improving care.

Heart disease in pregnancy is a critical but often overlooked challenge.

Dr Paz Tayal, Clinical Associate Professor in Cardiology at Imperial's National Heart and Lung Institute and Co-Chief Investigator of PREG-HEART, said, “Heart disease in pregnancy is a critical but often overlooked challenge. PREG-HEART gives us a way to listen to women at scale, understand their experiences, and generate the evidence needed to make pregnancy safer for families across the UK.” 

Dr Antonio de Marvao, Clinical Senior Lecturer at King’s College London and Co-Chief Investigator, added, “By allowing women to take part on their own terms, wherever they live, PREG-HEART lays the foundation for better diagnosis, better treatment and ultimately safer pregnancies.” 

Patient voices at the heart of the study 

Women with lived experience of heart disease in pregnancy are embedded within the research team and have shaped the study’s design. One contributor, Claire Sheppard, was diagnosed with peripartum cardiomyopathy after childbirth following delayed recognition of her symptoms. 

She said: “PREG-HEART gives women like me the chance to change the future by helping researchers build the evidence needed to improve care for mothers who come after us.” 

National collaboration 

PREG-HEART is supported by the National Institute for Health and Care Research–British Heart Foundation Cardiovascular Partnership, through a Pump-Priming Funding Award. The study is hosted by Heart Hive, a direct-to-participant platform supporting patient-led engagement in heart research. 

Professor Lucy Chappell, Chief Scientific Adviser to the Department of Health and Social Care and CEO of the NIHR, said, “Maternal heart disease can be devastating. Studies like PREG-HEART are crucial for improving understanding, speeding up diagnosis and treatment, and increasing access to research for women most affected.”

The research is also supported by the NIHR Imperial Biomedical Research Centre, a translational research partnership between Imperial College Healthcare NHS Trust and Imperial College London, by the NIHR–British Heart Foundation Maternal Cardiovascular Health Partnership, Pumping Marvellous, and Cardiomyopathy UK.

This article has been adapted from a NIHR press release.