Developing a National Diabetes Registry with people living with diabetes and carers
Introduction
Research Area:
Diabetes
What is the research about?
A National Diabetes Registry is being developed, to bring together important data about people living with diabetes and the health services they use.
Public and Patient Involvement (PPI)
The HSE National Diabetes Registry team, led by Prof Sean Dinneen, wants to build the Registry together with people living with diabetes, with doctors and other healthcare professionals, with technical experts, and with other stakeholders. Collecting and analysing the Registry data will generate insights that can help improve diabetes policy and planning, diabetes care and the lives of people living with diabetes in Ireland.
The Registry team is setting up a Lived Experience Group to make sure that people living with diabetes are involved in the design, development and ongoing implementation of the National Diabetes Registry.
If you live with diabetes or care for or support someone living with diabetes, and would like to join this group, the Registry team would like to hear from you.
Who can get involved?
You must:
– Live in Ireland
– Be 18 years or older
– Live with diabetes or care for or support someone living with diabetes
– Able to speak and understand English
We are also keen to involve some people who live diabetes and another chronic condition eg kidney disease.
Find out more
To find out more and express an interest in joining this group, take a look here: https://surveys.hse.ie/t/NDRLivedExp/
Opportunity for:
Involvement Opportunity Details
Time
Time commitment:
Meetings mainly online, one in person meeting annually. Maximum time commitment: 3 to 4 hours per month
Contact between meetings:
Occasional emails, with the option for 1-on-1 online discussions to help prepare for meetings if desired.
Length of involvement:
We would like an initial commitment of 2 years but members can opt out at any stage.
Start date for involvement:
1/11/2026
Logistics
Where?
If online, explain how:
MS Teams
If in person, explain where:
Location for the one annual in-person meeting will be agreed with the Lived Experience Group when it is set up.
Other ways of communicating:
Funding available for:
If no funding available, explain why:
Not applicable
Other Information
Stage of the research study/ programme:
Funded but not yet started
Is this opportunity for PPI in a PhD:
No
Closing date to contact researchers:
30 September 2026
Research Team
Contact person:
Fiona Macnair ; HSE National Diabetes Registry Team
University/organisation:
Contact email:
ndr@hse.ie
Researcher background:
The team is led by Prof Sean Dinneen, diabetes specialist and former national lead of the PPI Ignite Network
Research funder:
Department of Health
Photo:
Interested in this PPI Opportunity?
Please complete this form and click SUBMIT