Research

Hello! My name is Helena. I work as part of the North East and North Cumbria Congenital Heart Disease Network. I am inviting you to take part in a project to help improve the wellbeing support offered to young people and families living with CHD. 

Thank you for your interest in taking part in this project, phase 1 (the survey) is now complete. We are now moving onto phase 2 (focus group). 

This focus group is specifically designed to share your ideas, opinions and experiences of what would help support children and families living with congenital heart disease across the North East and North Cumbria. We may ask you to generate some ideas on how we can improve the services we deliver and what we might need more or less of. 

You can take part if you are:

• A young person living with CHD up to the age of 25.
• The parent/carer/family member of a young person (up to the age of 25) living with CHD. 

You will be invited on a 'first come first serve' basis to attend a 1 hour (approx.) focus group session. 

The focus groups will be held either in person or online. 

Specifically we will ask you questions to understand how you need us to support you and your family whilst living with congenital heart disease.  

All your information will be kept confidential and anonymised. 

To express your interest in participating in our focus group or find out further information please email us at nuth.enquiries-nencchdn@nhs.net. 

You can take part if you are:

• A young person living with CHD up to the age of 25.
• The parent/carer/family member of a young person (up to the age of 25) living with CHD.

We will ask you to share your thoughts on what you think are some of the emotional challenges of living with CHD. We will ask you questions about you, to help us build a picture of views across the region. All your information will be kept confidential and anonymised.

Complete a short questionnaire all about you, a consent form, and one question asking for your views on the emotional challenges of living with CHD. Help us improve our services! If you have any questions, or would like to find out more, please get in touch via email: nuth.enquiries-nencchdn@nhs.net

Find out more about the project by opening the story below

The recent restructure of the Faculty of Medical Sciences at Newcastle University has led to the creation of three core Institutes: 

• Biosciences
• Translational and Clinical Research
• Population Health Sciences

Within these institutes there are several cross-cutting themes (Appendix 1). Those involved in congenital cardiac research in Newcastle have newly organised into the congenital heart disease (CHD) research group with members in all Institutes, but coming together under the theme of Reproduction, Development and Child Health. This group leads CHD research across the North East and North Cumbria-CHD Network. Clinicians hold honorary contracts appropriate to their level of involvement.

Dr Louise Coats (Clinical Intermediate Fellow; Honorary Consultant ACHD) is the Clinical and Administrative lead for the CHD research Group. The group now has a dedicated web presence (https://blogs.ncl.ac.uk/congenitalhearts/) to link between themes, to wider cardiovascular research page, NHS and Network sites. The group recently contributed to Newcastle’s successful bid to form an Academic Health Science Partnership between Newcastle University and Newcastle upon Tyne NHS Foundation Trust.

Clinical Research Network North East and North Cumbria (https://rdn.nihr.ac.uk/region/north-east-and-north-cumbria/) is hosted by Newcastle Upon Tyne Hospitals NHS Foundation Trust, and provides the infrastructure that allows high-quality health research to take place in our region, so that patients and the public can be involved in and benefit from better health and healthcare. 

• Study delivery teams to provide research support
• Education: Free GCP training for staff
• MedConNecT North – links with Industry/Tech etc

Over the course of the last year, we have developed strong links with the CRN cardiac research nurses who have supported Debbie McParlin in the delivery of the Approach II study (PI LC) and the Revival study (PI MN).