Digital platform launched for heart health in pregnancy research

A national study will see the first UK-wide direct-to-patient research platform dedicated to heart health in pregnancy, the leading cause of maternal mortality.

Heart diseases affect around 2% of pregnant women, yet current evidence is limited because most research studies are small and based only in specialist centres.

The two-year PREGnancy, HEART Health and Cardiovascular Disease (PREG-HEART) study launched this to provide a  platform for future clinical trials and other studies.

Women across the UK can join the study online via the PREG-HEART digital platform and provide their health information and permission for long-term follow-up by using their NHS records.

Professor Lucy Chappell, chief scientific adviser to the Department of Health and Social Care and chief executive of the National Institute for Health and Care Research (NIHR), said: “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 are vital as they increase 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.”

The study is being hosted by the Heart Hive, a direct-to-participant website supporting patient-led engagement and participation in heart research.

Claire Sheppard, who was diagnosed with heart failure following her pregnancy and is part of the PREG-HEART research team, 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.”

Addressing healthcare inequalities

PREG-HEALTH will seek to reach women from black and other minority backgrounds, which have significantly poorer neonatal health outcomes, through partnerships with maternity units serving diverse communities and collaboration with community organisations.

It is supported by the 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.

Professor Deborah Lawlor, maternal cardiovascular health lead for the NIHR-BHF Cardiovascular Partnership, said: “Maternal cardiovascular disease is a growing public health challenge, and research has been held back by a lack of large, representative studies.

“PREG-HEART is exactly the kind of ambitious, collaborative programme the NIHR-BHF Partnership was created to support.

“Importantly, it allows any pregnant woman to take part, wherever she lives. This will help us gather the scale and diversity of information needed to improve care and reduce inequalities.”