Marking World Sjögren’s Day (23 July), the SYNERG-IE Programme, based at RCSI University of Medicine and Health Sciences, has launched its website, social media, and has opened a call for patients and the public to join an advisory panel. The research programme aims to address longstanding challenges in the recognition, diagnosis, and management of the condition.

Sjögren’s (pronounced 'SHOW-grins') is a chronic debilitating autoimmune disease which affects approximately up to 1 in 200 people worldwide, predominantly women aged between 40-50 years at time of diagnosis.

The ambitious €2.5 million study, funded by the Health Research Board, is known as SYNERG-IE. It is co-designed with patient-group Sjögren’s Ireland and combines the skills of multidisciplinary researchers, the insights of patients, and the needs of healthcare professionals and policymakers to bring about transformative change in Sjögren's care and research. Academic collaborators include experts from University College Cork, National College of Art and Design, and Technological University Dublin.

The five-year programme, funded by the Health Research Board APRO-2023-28, aims to make a difference to the lives of people affected by Sjögren's across several areas:

• By optimising prescribing practices and medicines use, people will experience more personalised and effective treatments.
• Co-design approaches will be used to develop improved care pathways to enhance care experiences.
• National guidance and policies will provide a clearer framework for primary care-bases healthcare professionals, reducing the current delays in diagnosis and treatment.
• The increased knowledge stemming from undergraduate and postgraduate education initiatives will improve awareness and understanding.

Dr Michelle Flood, Senior Lecturer, RCSI School of Pharmacy and Biomolecular Sciences and SYNERG-IE Principal Investigator said: “With the launch of the call for patients and the public to join the SYNERG-IE Advisory Board on World Sjögren's Day 2024, we are excited to embark on a much-needed research programme to transform care experiences for people living with Sjögren’s. Together, we aim to make impactful advancements through collaboration.”

Patient and Public Involvement (PPI) has been embedded in the project from an early stage. A ground-breaking aspect of the project is the appointment of a patient researcher and inclusion of members of Sjögren's Ireland at all levels of programme governance in addition to a dedicated PPI Advisory Committee, ensuring that the patient voice directly informs research priorities and outcomes.

Sjögren’s Ireland was founded in 2022 to meet a need for advocacy, education and community for people living with Sjögren’s in Ireland. Deirdre Collins, Sjögren’s Ireland Co-founder said: “We are delighted to partner with RCSI on the SYNERG-IE research programme. We believe that incorporating the patient perspective into this vital research will lead to much needed changes in the diagnostic and care landscape for Sjögren’s patients nationally and globally.”

For more information visit the SYNERG-IE website, X profile, LinkedIn page or Instagram.