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You are here: Home / News / Have YOUR say on the future of Congenital Heart Disease research.

Have YOUR say on the future of Congenital Heart Disease research.

in News

A national study has been launched to identify and prioritise the areas of future research in congenital heart disease that are most important to patients, their families, and healthcare professionals. Tiny Tickers are supporting this project to help ensure that patients’ and families’ voices are heard. This is your chance to have your say.

Congenital heart disease is the most common type of birth defect, affecting 12 children born every day in UK. Of these babies and children, many require one or more open heart operations or interventions in their lifetime.

Outcomes continue to approve and today 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.

Picture of a baby with a congenital heart defect during treatment in hospital
What questions would you like to see answered by research, relating to the diagnosis, treatment, or outcomes of congenital heart disease?

The survey is now open and can be completed online at: https://redcap.link/congenitalPSP. It is also available to download as a PDF in English, Welsh, Polish, Bengali, Urdu, Gujarati, or Hindi.

It should take no more than 10 minutes to complete and with your help, the findings will be used to:

  • Develop a national strategy, to address the issues that matter most
  • Guide the design of future studies, aimed at improving the clinical care and day-to-day lives of children and adults born with congenital heart disease

This survey will have a major impact on the direction of congenital heart disease research in the UK.

This study is funded by George Davies, through a generous donation to the Birmingham Children’s Hospital Charity, as his granddaughter has previously undergone complex cardiac surgery.

For more information about the Congenital Heart Disease Priority Setting Partnership, please visit: www.birmingham.ac.uk/congenital-psp

Email: congenitalPSP@contacts.bham.ac.uk

Twitter: @congenitalPSP

Facebook: congenitalPSP