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Living With End Stage Kidney Disease In Ireland
Patient Satisfaction With ESKD Services In Ireland
A landmark national survey capturing the experiences of people living with End Stage Kidney Disease in Ireland has been launched by researchers from the Royal College of Surgeons in Ireland (RCSI) University of Medicine and Health Sciences.
The survey, the first of its kind in Ireland, was funded and published by the Irish Kidney Association with collaboration from the HSE’s National Renal Office. Over 1,000 people living with kidney failure, including those on dialysis and transplant recipients, contributed to the study through a specially designed patient-reported experience survey.
Living With End Stage Kidney Disease In Ireland
Patient Satisfaction Report
This report was commissioned by the Irish Kidney Association (IKA) and the Health Service Executive (HSE) National Renal Office (NRO). Research was funded by the IKA and a project funding grant from CSL Vifor.
PRO-GD Study
Patient Reported Outcomes in patients with rare kidney diseases
What Is This Research About?
The goal of the PRO-GD study is to develop and test a new questionnaire to study “Patient Reported Outcomes” (reports from patients about how they feel and function) in patients with rare kidney diseases. These diseases are called “glomerular diseases” although they have many other names.
We hope this new PRO-GD questionnaire can then be used when studying new treatments for glomerular disease and caring for patients with glomerular disease, thereby improving how patients feel and function. But this research cannot succeed without the help of patients like you!
What Would Taking Part Involve?
We are looking for 180 patients with glomerular disease living anywhere in Ireland to complete 2-3 questionnaires over the course of 6 months asking about themselves, their health, and their quality of life. No travel is required and the surveys will either be emailed or posted to you.
Who Can Take Part In This Research?
Adults 18 years or older with Glomerular Disease, Nephrotic Syndrome or Glomerulonephritis.
Diseases we’re interested in studying include: IgA nephropathy, membranous nephropathy, minimal change disease, focal segmental glomerulosclerosis (FSGS), and membranoproliferative glomerulonephritis (MPGN).
Not sure if you have one of these kidney diseases? Just ask your nephrologist or get in touch with our research team and we’ll help you to figure this out!
Who Is Leading This Research?
The PRO-GD study is led by Dr. Michelle O’Shaughnessy, Consultant Nephrologist at Galway University Hospitals, and supported by the Health Research Board Clinical Research Facility in Galway. It is supported by grant funding from the Health Research Board and the Irish Kidney Association.
How Can I Get Involved?
The research team can be contacted directly by patients from across Ireland by email or telephone:
0861992951 or 0862012270
healthy living
Sports / Physical Activity
In 2024, the Irish Kidney Association worked with members of Transplant Team Ireland to establish a new, independent organisation (Transplant Sport Ireland) to build on the legacy and continue delivering an inclusive programme of sports.
transplant sport ireland
Transplant Sport Ireland (TSI) is a volunteer-run organisation where transplant recipients, and people on dialysis, can connect and support one another in a common belief that sport plays a vital part in maintaining good health.
kidney beam
Kidney Beam is an exercise and lifestyle management app designed for kidney patients; it offers a way to improve physical activity levels from home.
refit for life
The Refit for Life! Program is an initiative of the World Transplant Games Federation, aimed to help the transplant community take the first steps to get active and to support their ongoing fitness and wellness journey.
Diet
The IKA knows that what we eat has a very important role to play in our medical management and that following the correct diet can be challenging.
For this reason, please click on the link below to find food, diet and nutrition information developed by state registered Irish Renal Dietitians.
Please use this as a guide and reference tool, if you have any questions or queries please ask your doctor to refer you to the dietitian.
