A new national study aims to transform understanding of heart disease in pregnancy, the leading cause of maternal mortality and serious complications in the UK.
Heart disease accounts for more than one third of pregnancy-related maternal deaths. The PREG-HEART (PREGnancy, HEART Health and Cardiovascular Disease) study will create the first UK-wide, direct-to-patient research platform dedicated to heart health in pregnancy.
The study is open to pregnant women in the UK who have been diagnosed with a heart condition either before or during pregnancy, as well as women without heart disease. Women can enrol online in just a few minutes and take part from home.
This study gives women a voice and a way to contribute to research on their own terms. Whether they have a known heart condition or a completely normal pregnancy, every woman who joins will help us answer questions that affect families every day. PREG-HEART lays the foundation for better diagnosis, better treatment and ultimately safer pregnancies.
Dr Antonio de Marvao, Clinical Senior Lecturer at King's College London, Consultant Cardiologist and Obstetric Physician, and PREG-HEART Co-Chief Investigator
Heart diseases affect around 2% of pregnant women (around 16,700 women in England and Wales in 2022), however current evidence is limited as most research studies are small and based only in specialist centres. PREG-HEART changes this by enabling women from anywhere in the UK to join online, provide their health information and permission for long-term follow-up by using their NHS records.
Claire Sheppard was diagnosed with heart failure following pregnancy in 2014 and is part of the PREG-HEART research team. Claire said: "When I became seriously unwell after the birth of my son, my symptoms were repeatedly put down to anxiety or normal recovery. In reality, I had peripartum cardiomyopathy - a rare form of heart failure that occurs late in pregnancy - but because so little is known about heart disease in pregnancy, my diagnosis was delayed and my life was put at risk. PREG-HEART gives women like me the chance to change that by helping researchers build the evidence needed to improve care for future mothers."
The PREG-HEART digital platform was designed with women - like Claire - who have experienced heart disease in pregnancy and is simple, secure and easy to use on a phone or computer.
PREG-HEART will also look to reach women from Black and other minority backgrounds who have significantly poorer pregnancy outcomes, through partnerships with maternity units serving diverse communities, and collaboration with trusted community organisations. Their involvement will help researchers build the evidence needed to improve care, identify risks earlier and make pregnancy safer for mothers and babies nationwide.
Heart disease in pregnancy is a critical but overlooked challenge. With PREG-HEART, we finally have a way to listen to women at scale, understand their experiences, and generate the evidence needed to make pregnancy safer for every family. This study represents a transformative step toward tackling the leading cause of maternal death in the UK.
Dr Paz Tayal, Associate Professor at Imperial College London and PREG-HEART Co-Chief Investigator
PREG-HEART brings together cardiology, obstetrics, epidemiology, midwifery, genetics and patient representatives across the UK, and provides the platform for future clinical trials and studies. The research is being hosted by the Heart Hive, a direct-to-participant website supporting patient-led engagement and participation in heart research.
The study is supported by the National Institute for Health and Care Research (NIHR)-British Heart Foundation (BHF) Cardiovascular Partnership through a Pump-Priming Funding Award in collaboration with Cardiomyopathy UK, the Fetal Medicine Foundation, the EPSRC/UKRI South Yorkshire Digital Health Hub and Pumping Marvellous.
Maternal heart disease can be a devastating illness. The findings from the PREG-HEART study will be crucial in growing our understanding, driving awareness among pregnant women and clinicians, and speeding up diagnosis and treatment to improve outcomes. Studies which bring research to participants in their own homes is vital as it increases accessibility to the highest quality care for all people, particularly those living with the greatest burden of disease. It gives women a voice and improves the lives of people for generations to come.
Professor Lucy Chappell, Chief Scientific Adviser to the Department of Health and Social Care (DHSC) and CEO of the NIHR,
