Update – Latest News August 2023

Congenital Heart Disease Priority Setting Partnership Report

This is an important and exciting step forward in the understanding, management and care for people of all ages living with congenital heart conditions.

Some of you may have participated in the research which helped shape this report

Read more here:https://bit.ly/453zR8g or click on the image to open the report.

Cover of Report

PREVIOUSLY

In a recent national survey, we asked patients, their families, and healthcare professionals to say what questions they would like to see answered by future research, relating to the diagnosis, treatment, and outcomes of congenital heart disease – thank you to the 524 people who submitted questions! Somerville Heart Foundation are supporting this project to help ensure that all voices are heard.

The submitted questions have been filtered, categorised and evidence-checked to produce two lists of summary questions: one containing 56 questions related to children with congenital heart disease and antenatal care, and another containing 47 questions related to adults with congenital heart disease.

Now we would like you to choose the questions that are most important to you, from one or both of the lists. These surveys are open to patients with congenital heart disease, their families, healthcare professionals, charities, and anyone else affected by these conditions. This is your chance to have your say – so we want to hear from you!

The surveys are now open and will close in mid-May, ahead of the prioritisation workshops in June. Each survey will take approximately 20 minutes to complete and with your help, the findings 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

Email: congenitalPSP@contacts.bham.ac.uk

twitter: @congenitalPSP

Facebook: @congenitalPSP