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Results of the Congenital Heart Disease Priority Setting Partnership

Top 10 lists of priorities, one child/antenatal and one adult congenital

21 December 2022 (Last updated: 21 Dec 2022 16:44) by Nigel Drury

 

Working with the James Lind Alliance, the Congenital Heart Disease Priority Setting Partnership brought together patients, parents, charities and healthcare professionals to identify national priorities for research. The results have now been published and are available open access:

Results

 With two Top 10 lists of priorities, one child/antenatal and one adult congenital:

 

Top 10 national priorities for research in child/antenatal congenital heart disease

  1. How can damage to organs (e.g. heart, brain, lung, kidney, bowel) during heart surgery in children with CHD be minimised to reduce complications, especially in those who require multiple operations?
  2. How can pre- and post-natal screening strategies (e.g. scans, pulse oximetry, novel techniques) be improved to achieve greater accuracy, avoid late diagnosis, and reduce complications from CHD?
  3. What are the effects of CHD, low oxygen saturations, and interventions on brain development and behavioural outcomes, and how can these be improved?
  4. How can the frequency or need for reoperations be reduced for people with CHD (e.g. improved valve/conduit longevity or that grow with the patient)?
  5. How can technology be used to deliver personalised care and improve outcomes in CHD (e.g. artificial intelligence, 3D printing, genomics, stem cells, organ regeneration)?
  6. What is the impact of living with CHD on mental health in children and how can this be improved through access to psychological support and other therapies?
  7. What is the impact of living with CHD on quality of life in children and how can this be improved?
  8. How can less invasive interventions be performed for CHD with the same outcomes as open-heart surgery?
  9. How can the longevity of the Fontan circulation be prolonged and the impact of complications (e.g. liver, protein-losing enteropathy (PLE), renal, endocrine, fertility) be reduced?
  10. What are the long-term outcomes and life expectancy of children born with CHD?

 

Top 10 national priorities for research in adult congenital heart disease

  1. How can less invasive interventions be performed for CHD with the same outcomes as open-heart surgery?
  2. How can the longevity of the Fontan circulation be prolonged and the impact of complications (e.g. liver, protein-losing enteropathy (PLE), renal, endocrine, fertility) be reduced?
  3. What is the impact of living with CHD on mental health in adults and how can this be improved through access to psychological support and other therapies?
  4. How can technology be used to deliver personalised care and improve outcomes of those with CHD (e.g. artificial intelligence, 3D printing, genomics, stem cells, organ regeneration)?
  5. What are the risks and limitations associated with pregnancy, childbirth, and motherhood for women with CHD, and what information and support is available?
  6. What are the best treatment strategies for heart failure in adults with CHD, in particular those with a systemic right ventricle?
  7. How can the management of arrhythmias, including sudden cardiac death, in adults with CHD be improved?
  8. How can the indications, timing of referral, and outcomes of transplantation and long-term mechanical support in adults with CHD be improved?
  9. What is the impact of living with CHD on quality of life in adults and how can this be improved?
  10. How can the frequency or need for reoperations be reduced for people with CHD (e.g. improved valve/conduit longevity or that grow with the patient)?

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