Cystinosis Registry


  • A Prospective Cohort Study to Describe Practice Patterns and Outcomes in Children and Young Adults with Cystinosis


  • With recent treatment advancements, people with cystinosis are living longer lives. However, our understanding of the disease in the context of these recent advancements and new treatments is limited. By gathering data from people living with cystinosis over an extended period of time, the NAPRTCS registry will provide key information for physicians and researchers. This information can help guide practice, identify potential areas for management improvements and guide new therapies.


  • Pediatric and young adult patients up to age 25 years with cystinosis
  • Followed at a participating NAPRTCS center
  • Any level of kidney function including chronic kidney disease (CKD), on dialysis or after a kidney transplant

For more information or to find out how to get involved please contact Sara Boynton at

Cystinosis Patient Groups

Cystinosis Research Network


Cystinosis Research Foundation


Center list for Cystinosis Registry