The Registry is a list of the names and contact details of vascular patients, their care-givers, and members of the public from around the UK who have volunteered to provide feedback about vascular research studies.

The University of Leicester is the data controller for the information held on the Registry. The Registry is led by an experienced PPIE coordinator who works within the University of Leicester vascular research team.

No, the individuals who agree to have their details maintained on the Registry are then contacted to take part in multiple smaller PPI groups. Some Registry participants may only take part in one single focus group. Some participants opt to take part in PPI for several studies that they find interesting. Some attend groups and some offer their input via phone or email. Some individuals agree to be co-applicants on grant applications. They can take part in PPIE as much or as little as they want in the ways that work best for them.

Researchers cannot directly access the participant data held on the Registry. If a researcher would like to access PPIE support for their vascular study or project, then a request form must be completed. All aspects of the request will be dealt with by the PPIE coordinator. The coordinator will issue invitations to participate in groups to appropriate Registry members and will circulate any study documentation to be reviewed by PPIE members (for example, Plain English Summaries). The coordinator may also organise and facilitate PPI meetings or phone calls/emails, and will give feedback to researchers and to participants. The coordinator will work with you to provide updates to PPIE participants at study milestone points.

The coordinator will work with you at the point of your request to find the right ways to support your application or study, whilst also supporting the service provided. We want to ensure that our PPIE coordinator and participants can continue to deliver reliable, high-quality support for your work in a sustainable way. We also know that funding is not always available for pre-award PPI feedback, and we believe that this shouldn't act as a barrier for patients and members of the public to have their voices heard within study designs. Please contact us to discuss your needs.

If the research study is UK-based and related to vascular conditions, then the Registry participants will offer PPI support. This includes randomised control trials, observational studies, studies that are not recruiting patients, small feasibility studies, and qualitative studies.