Study Details

Pyruvate Kinase Deficiency Global Longitudinal Registry

(IRB#: IRB_00109616)

Polycystic Kidney disease (PKD) is a rare blood disease. PKD affects both children and adults and can cause severe health conditions, especially in young children. People with PKD lack pyruvate kinase R, a specific protein in the body needed for healthy red blood cells. There is currently no cure for PKD. The Pyruvate Kinase Deficiency Global Longitudinal Registry aims to help better understand PKD and improve medical care. This Registry collects information from patients during routine medical care. Participants past, present, and future medical records will be shared with the Registry database. Participation will last 2 to 9 years.

I AM INTERESTED