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. BACCNA is supporting this project to help ensure that all voices are heard. This is your chance to have your say and they would like to hear from you.
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 or is available to download as a PDF in English, Welsh, Polish, Bengali, Urdu, Gujarati, or Hindi.
It shouldn’t take longer 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, which will have a major impact on the direction of congenital heart disease research in the UK.
This study is funded by George Davies, the high street fashion entrepreneur behind brands such as Next, Per Una, and George at Asda, 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
You can email the partnership group: congenitalPSP@contacts.bham.ac.uk, follow them on Twitter: @congenitalPSP, or Facebook: @congenitalPSP
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