Transforming collaborative research: a national strategy to address the JLA priorities for children and adults with CHD
A national strategy to address the James Lind Alliance priorities for children and adults with congenital heart disease
In recent years, outcomes have continued to improve and nowadays around 97% of children born with congenital heart disease are expected to survive into adulthood. However many develop late complications related to their condition or previous surgery/interventions and almost all require life-long follow-up.
In 2021-22, the James Lind Alliance Congenital Heart Disease PSP brought together patients, parents, charities (including Little Hearts Matter), and clinicians to establish national clinical priorities for research in children and adults with congenital heart disease. The two Top 10 lists of priorities were launched at the BCCA annual conference in November 2022 and published in Open Heart.
A national strategy to address these priorities has been developed, with endorsement from professional bodies and national charities, and supported by NHS England Congenital Heart Disease Clinical Reference Group and the Women and Children’s Programme of Care. It includes establishing the Congenital Heart Research Network, a UK & Ireland collaborative network for multi-centre studies including clinical trials, and a national Congenital Heart Disease Patient and Public Involvement group.