The “Living Well” programme is a self-management programme for people affected by end stage kidney disease. Self-Management is about recognising and understanding that you, and how you live, can make a difference to your illness.
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 Symdrome or Glomerulonephritis.
Diseases we're intersted 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: