Understanding what information materials are needed for people who have PH with congenital heart disease

Research In this section

PHA UK led research
- Your data, your thoughts
PHA UK supported research
- A chance to help genetic research in PAH
- Could supervised home exercise help people with pulmonary hypertension?
- Do you experience low mood or depression?
- Understanding what information materials are needed for people who have PH with congenital heart disease

Do you have PH with congenital heart disease?

We’re working with a group of specialist doctors to help develop information materials for people with PH and congenital heart disease (CHD), and we need your help to guide their production.

Before we start developing resources, it’s important that we understand what patients and their caregivers want to know, and where the support is needed.

If you are over 16 and have PH with CHD, or you provide care for someone who does, please take a few minutes to complete our survey before 31^st December 2023.

Please complete this survey if you are a patient

Please complete this survey if you are a caregiver

By taking the time to complete our survey you will help ensure the materials we produce are the best they can be. Thank you.

This work is being carried out by the PHA UK in collaboration with the CHAMPION group, which stands for Congenital Heart disease And pulMonary arterial hyPertension: Improving Outcomes through education and research Networks.

The group is made up of clinicians specialising in the management of pulmonary hypertension (PH) and of congenital heart disease (CHD from a number of specialist centres in the UK. As the name suggests, their aim is to help improve the management of patients with PH due to CHD through research and education.