It has since then been found that these cysts are uncommon and are not found in the majority of the patients with MUC1 mutations. For this reason, this name has been abandoned, scientists (part of the Kidney Dialysis Initiatives and Global Outcomes group) specializing in this disease came together formally and created an official name for this and similar conditions.
The cysts, which were previously thought to be common in patients with MUC1 mutations, have since been found to be uncommon. This led scientists specializing in the disease to come together and establish an official name for these conditions.