Cystinosis Registry

What?

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

Why?

  • 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.

Who?

  • 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 sboynton@naprtcs.org.

Cystinosis Patient Groups

Cystinosis Research Network

https://cystinosis.org/

 

Cystinosis Research Foundation

https://www.cystinosisresearch.org/

 

Center list for Cystinosis Registry

Title Number City State
Seattle Children's Hospital 041 Seattle Washington
Cleveland Clinic Foundation 077 Cleveland Ohio
Cincinnati Children's Hospital Medical Center 004 Cincinnati Ohio
Montefiore Medical Center 068 Bronx New York
St. Louis Children's Hospital 056 St. Louis Missouri
Children's Mercy Hospital 018 Kansas City Missouri
Johns Hopkins University 015 Baltimore Maryland
Children's Hospital- Boston 001 Boston Massachusetts
Children's Memorial Hospital-Chicago 014 Chicago Illinois
Nemours Children's Clinic 101 Orlando Florida
Joe DiMaggio Children's Hospital 162 Hollywood Florida
Children's Hospital of Alabama 038 Birmingham Alabama