Following on from the recent Congenital Heart Disease Priority Setting Partnership, a national strategy to address the priorities for research in children and adults with CHD has been launched.
The document has been formally endorsed by professional bodies (BCCA, SCTS) and national CHD charities (Children’s Heart Federation, Somerville Heart Foundation), and is supported by the NHS England Congenital Heart Disease Clinical Reference Group and the Women and Children’s Programme of Care.
Whilst the priorities provide a platform for conducting the research that matters most, the strategy outlines the structures through which they can be translated into research questions and funded studies. Together, these present a unique opportunity to transform collaborative CHD research in the UK and Ireland for the benefit of the whole community.
The group will be developing the structures outlined in the strategy over the coming months, including: the Congenital Heart Research Network, a UK & Ireland collaborative network for multi-centre studies, with a focus on clinical trials that can impact on clinical care; and a national CHD Patient and Public Involvement group, so that patients, families and charities can continue to be actively involved in driving the research agenda.