Research

Improving physical activity for patients with CHD

Do you have or care for someone with congenital heart disease?

Would you be interested in sharing your views of physical activity participation for children with congenital heart disease?

Karen is recruiting participants to take part in a questionnaire and/or interview as part of a research study for people with lived experience of CHD. The study aims to look at two groups of participants and you will either have CHD yourself and are over 18 years of age or you care for someone who has CHD.

For more information contact Karen on the details below or use the QR codes in the leaflet.

Contact: Karen Caulfield - clinical specialist physiotherapist

karen.caulfield3@nhs.net

0191 2139740 (Monday-Wednesday)

IRAS Project ID: 337243

Support and adjustments in the workplace for autistic adults, and differences between women and men:

Looking for research participants!

Are you 18 years old or older?
Are you diagnosed, or self-diagnosed autistic?
Do you live in the UK?
Are you currently employed, or been employed in the last 2 years?

You might be interested in this research project.

What is the purpose of the project?

We aim to understand the workplace support needs of autistic people and compare results across different gender groups to identify any variations in effectiveness or satisfaction levels.

Who is carrying out this research?

Cardiff University and Health and Care Research Wales.

For additional details on participating in this study, please reach out to Melanie Fegan at Feganm@cardiff.ac.uk

Click on the link for further information and to take part – https://app.onlinesurveys.jisc.ac.uk/s/cardiff/autism-survey-1

The Illness Perception Questionnaire – Revised: Congenital Heart Disease (IPQ-R-CHD)

Looking for research participants!

Are you over 18 years old and receiving long term follow up for CHD (diagnosed before the age of five)?

Researchers at the University of Manchester (funded by the British Heart Foundation) are looking for people to take part in a study to help them develop a new questionnaire for people with CHD about their understanding of their condition and the impacts it might have on them.

The study involves completing a set of questionnaires at two timepoints (4 weeks apart).

Full ethical approval has been received from the NHS REC and HRA committee.

If you would be interested in taking part in this study or would like further information about this research, please contact the research team to receive a participant information sheet.

Beth Callander (PhD student): beth.callander@postgrad.manchester.ac.uk

Subject title: IPQ-R-CHD (NENC)

Understanding the health care journey of patients with ACHD

Are you an adult with a diagnosis of congenital heart disease?

Would you be interested in sharing your experiences of living with adult congenital heart disease (ACHD) and your health care journey, for a research project ?

Sarah is recruiting patients to take part in an interview project. The interviews will last approximately 30-45 minutes and will be over Microsoft Teams.

If you are interested in taking part, please use the email below for Sarah who will be happy to provide more information.

Contact: Sarah Ellison, LJMU, School of Nursing and Allied Health.

S.R.Ellison@2021.ljmu.ac.uk

IRAS Project ID: 308352

Research at Newcastle University

Faculty of Medical Sciences at Newcastle University

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.

Research support

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).