Report shows UK and Ireland-wide network to advance ‘urgently needed’ congenital heart disease clinical research

Congenital heart disease (CHD) researchers will be able to more easily collaborate to answer the most important questions about the most common type of birth defect which affects 13 children born in the UK every day.

‘Transforming collaborative research’ is a national strategy document to urgently address the Top 10 priorities for research in children and adults with congenital heart disease, as determined by patients, parents, charities and clinicians in the recent James Lind Alliance Priority Setting Partnership.

The strategy, which has been endorsed by both professional bodies and national charity partners, outlines three focus areas that will bring together centres of excellence around the British Isles to collaborate on impactful research studies, including clinical trials.

First to set up the Congenital Heart Research Network, a new UK and Ireland-wide network bringing together all CHD centres, which will enable researchers to scale their studies, especially to develop multi-centre trials. Second, to establish a national patient and public involvement and engagement group to enable patients, their families and charities to actively contribute to research. Finally, to establish multi-disciplinary groups to focus on addressing one or more of the specific priorities identified by the Priority Setting Partnership.

“The proposed Congenital Heart Research Network will be a UK and Ireland collaborative network for multicentre studies, focusing on clinical trials and other studies that answer the most important research questions and have the potential to change clinical practice and patient outcomes. If embedded successfully, the strategy has the opportunity to transform collaborative congenital heart disease research in the UK and Ireland for the benefit of the whole community, building on existing research infrastructure and training the next generation of clinical researchers.”

Mr Nigel Drury, Associate Clinical Professor, Institute of Cardiovascular Sciences, University of Birmingham and Consultant in Paediatric Cardiac Surgery, Birmingham Children’s Hospital
“Somerville Heart Foundation is delighted to support the development of the Congenital Heart Research Network. This is an important and exciting step forward in the understanding, management and care for people of all ages living with congenital heart conditions” said Fiona Kennedy, Chair of Somerville Heart Foundation.

The clinical study groups are intended to comprise of doctors, nurses, allied health professionals, researchers, patients, parents and charities. The role of the group will be to translate the priority of interest into specific research questions.

Each of these three areas should have a positive impact on the research environment for congenital heart disease and help drive forwards diagnosis, treatment and care to achieve more positive outcomes for patients.

“The Children’s Heart Federation (CHF) Trustees, staff team, and patient and parent members were proud to take an active role as key partners in the priority setting partnership. We are uplifted by the strategy which demonstrates the importance of collaboration to transform CHD research in the UK and Ireland for the benefit of all those affected. We look forward to the next steps being taken to implement the three key parts of the plan” said Rajwant Kaur Singh, Chief Executive Officer, Children’s Heart Federation.

Congenital heart disease is the most common type of birth defect, affecting 1 in 100 children, and has a life-long impact, with an estimated 250,000 adults in the UK living with CHD. Through the recent James Lind Alliance Priority Setting Partnership, over 500 patients, family members, charities and clinicians took part in identifying and prioritising areas of research CHD. This process concluded with two workshops, to identify Top 10 lists of the most important questions for research in children and adults with CHD, which were published in December 2022 in the BMJ Open Heart journal.