Why Develop Disease Specific Research Groups?


It is often difficult to find information about rare or genetic conditions because only a few patients may have a specific disease at one hospital.

Disease Specific Research Groups (DSRGs) are run by clinicians and researchers with expertise in a specific rare or genetic kidney disease, who may be able to provide advice on tests, treatment or research. Please contact the ARRK Registry if you are interested in setting up a new group.

We are interested in getting patient’s feedback and advice on specific conditions. Please contact the ARRK Registry if you are a patient that would like to be part of a DSRG.

To become a patient in the registry, you can speak with your kidney doctor and forms for participation and consent will be provided for you to participate.