Our PPIE Registry members and coordinator have been busy supporting vascular research studies and projects around the UK. Scroll down to keep up to date with the latest Registry news:
13th January 2026
Registry website launched!
The UK Vascular Research PPIE Registry is enormously pleased to announce the successful launch of its brand new website in December 2025.
The results of our participant evaluation survey circulated to Registry members in May 2025 pinpointed the need for a central resource that could offer information about PPIE opportunities to be involved in designing research, as well as clear signposting to active vascular research studies looking for participants.
Guided by the members of our Registry Participant Advisory Group (PAG) pictured left, our PPIE coordinator Imelda Black designed and created the new website as an additional information hub for current members to explore PPIE opportunities, and for vascular patients, care-givers, and members of the public to find out more about the Registry and how to get involved.
You can visit the website at www.ppivasc.uk. Thanks so much to everyone who filled in the evaluation survey, and to our PAG members for their time and input!
1st November 2025
Registry becomes a member organisation of the new Vascular Voice Network
Following discussions with the PPIE Registry Participant Advisory Group (PAG) members, we are pleased to announce that the Registry is now a formal member of the Vascular Voice Network (VVN).
The VVN was founded in late 2024, and has been established to improve collaboration and support between rare and common vascular condition charities, clinicians, researchers, and patient groups within the UK and beyond.
We hope that joining the network will offer even more opportunities for our PPIE Registry participants to give feedback and advice on vascular research studies and wider projects - and to help as many patients and researchers as possible to learn about the Registry too!
30th October 2025
Registry PPIE participants initiate research into AAA genetic testing
PPIE participants advising on the AAA Targeted Screening Study have used their own experiences of living with an Abdominal Aortic Aneurysm to offer suggestions to the research team about the potential benefits of genetic testing for the condition.
The study chief investigator Prof. Matt Bown (pictured left) found the PPIE groups feedback extremely persuasive, and has taken steps to explore the inclusion of genetic testing within the AAA screening programme. Plans for further research into this idea are currently underway.
A big thank you to the PPIE participants who have been advising on the AAA Targeted Screening Study. What a great example of the impact that lived experience can have on the future of vascular care.
To read more about the proposed research please click here
16th September 2025
PPIE Registry receives acclaim
Our PPIE coordinator Imelda Black was delighted to receive a High Commendation in the category of The Directors Award at Research at Leicester's Hospitals BRC Excellence Awards on behalf of all the amazing PPI participants on the UK Vascular Research PPIE Registry.
The work of the Registry was dubbed 'inspiring' by the Leicester NIHR Biomedical Research leadership team. Professor Matt Bown, the British Heart Foundation Professor of Vascular Surgery, pointed towards the collaboration of the participants not just within Leicester vascular research but in multiple PPIE collaborations around the nation.
Well done and thank you to all our PPIE participants! We really are working together to shape vascular research.
21st July 2025
Would you recognise the early stages of Peripheral Artery Disease (PAD)?
A chat between two vascular colleagues on a train sparked an idea of how to improve messaging about PAD. That idea has now led to reality! The Leicester vascular research team are very pleased to introduce the #PADawareness Campaign, with the support of the George Davies Charitable Trust.
Visual and information materials have been designed with the help of Registry PPI participants. #PADawareness stands will be held by clinicians and researchers from the vascular team at the Leicester Caribbean Carnival on Saturday 2nd August and the Shepshed Lions Charity Carnival on Monday 25th August. Members of the public will be offered information about the signs and symptoms of PAD, and about the Leicester VaLS clinic. The recent results of the LIMb Study will also be circulated.
We’ll be rolling out a survey to see if the general public can recognise the signs of PAD, and PPIE participants will be on hand with information about the PPIE Registry. There will even be a few #PADawareness freebies to take home. We hope you’ll come and find us to say hello!
1st July 2025
NHS England receives guidance from PPIE Registry participants
NHS England recently contacted the Registry asking for rapid PPIE opinions on their new leaflets and letters for the Abdominal Aortic Aneurysm (AAA) screening Programme. AAA screening is currently offered to all males over the age of 65 in England.
Many of our PPIE participants suggested constructive and insightful amendments to the documents via email. NHS England have sent a big thank you to all the participants who helped. Your feedback will have a positive and long-term impact on this important aspect of the screening programme.
3rd June 2025
What you told us: evaluation survey results
An invitation to complete an online evaluation survey was sent out to all PPIE Registry participants in May, so that we could find out what motivated them to join and what they thought of their experiences of helping to shape vascular research studies.
More than 50% of the Registry participants completed the survey.
We’re very happy to report that the respondents are satisfied with the process of becoming a PPIE Registry member, and are being offered opportunities to participate in PPIE. Appropriate updates are being received following groups, and the majority of participants feel that their input is valued by the researchers.
Thank you to everyone who completed the survey.
30th May 2025
Connecting with service providers in our communities
Our vascular research PPIE Coordinator Imelda Black was very pleased to attend the Forget-Me-Not Festival in June, which was hosted by the Alzheimer’s Society in partnership with Leicester City Football Club’s ‘In the Community’ programme. A range of workshops took place, which included everything from dancing to discussions. We had the opportunity to connect with representatives from LCFC’s Silver Foxes and from the local city and county council community services, and will be exploring collaborations to grow PPIE Registry membership. Many thanks to our NIHR colleagues for extending the event invitation to include the vascular research PPIE Registry!
Pictured: Imelda Black with Meg Foxnall (Regional Fundraiser for Alzheimer’s Society)
13th December 2024
PPIE participants become PAD campaign stars
Three of our PPIE participants experienced a taste of celebrity life after volunteering to be the patient faces of the AmpuNATION campaign.
The campaign, funded by medical tech company Abbott, seeks to raise awareness of Peripheral Artery Disease (PAD), and to show the potential impact of late diagnosis of the condition. The participants were asked to share their experience of vascular lower limb amputation, and the signs and symptoms of their PAD at the initial stages of the disease.
Participants then had their pictures taken by iconic photographer to the stars, Rankin, at his London studio. The official roll-out of the images will take place at the end of January 2025 at the National Portrait Gallery in London.
Pictured: Bryan Hoggard (Vascular PPIE participant) being photographed by Rankin
9th December 2024
"If I can give something back, I will!" - Vascular patients are shaping research
Our Vascular Research PPIE Registry participants are raising awareness of Peripheral Arterial Disease (PAD) and the importance of research in early diagnosis and treatment. Click on the link below to read the full press release:
Vascular patients are shaping research
Pictured: Samantha Wyles (Vascular PPIE participant)
5th December 2024
We wanted to say “Thank You!”
Over the last 18 months our Vascular Research PPIE Registry participants have given their time and their feedback to advise research teams, both here in Leicester and at academic centres all around the UK. They have used their often-difficult personal experiences of vascular conditions and healthcare provision to benefit patients like them who may take part in future research.
To say thank you, we sent out Certificates of Participation to everyone who had offered their time and advice to our researchers since the Registry was set up. 45 individuals received certificates in total. We think they’re all amazing, they truly inspire us to keep pushing our research as far as we can!