Do you have personal experience with nephrotic syndrome as a patient, family member or caregiver? The OPEN trial needs your help. Join our Consumer Advisory Group (CAG) to assist in treating children with steroid-sensitive nephrotic syndrome.

About the OPEN Study

Optimising dosE in Nephrotic syndrome or “OPEN” is a clinical trial led by Flinders University, Australia that aims to improve how we treat children with nephrotic syndrome (NS). This is a rare and serious kidney problem affecting 1 in 50,000 each year. The treatment for NS is steroid therapy. Most children with NS get better with steroid therapy, but up to 90% the condition comes back (relapses).

NS often continues to relapse for many years. Steroids work well for relapses but can cause many side effects. The dose of steroids that doctors use to treat relapses in children with NS was decided by international experts many years ago. Recently, it was suggested that children may respond equally well to smaller doses.

We do not know whether this will work for all children with NS, or whether it will affect further relapses. If lower doses of steroid are as effective, it should mean that children experience fewer and less severe side-effects of steroids. To answer this question, we plan to run the OPEN trial.

Applications to join the OPEN Consumer Advisory Group are now open: https://redcap.link/OPEN-Consumer-EOI