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/

Title Number Sort descending City State
Boston Children's Hospital 001 Boston

MA
United States

Duke University Medical Center 002 Durham

NC
United States

Cincinnati Children's Hospital Medical Center 004 Cincinnati

OH
United States

Phoenix Children's Hospital 005 Phoenix

AZ
United States

Ann & Robert H. Lurie Children's Hospital of Chicago 014 Chicago

IL
United States

Johns Hopkins Children’s Center 015 Baltimore

MD
United States

Children's Mercy Hospitals and Clinics 018 Kansas City

MO
United States

BC Children's Hospital 025 British Columbia

BC
Canada

University of Minnesota Masonic Children’s Hospital 029 Minneapolis

MN
United States

Children's of Alabama 038 Birmingham

AL
United States

UPMC Children’s Hospital of Pittsburgh 040 Pittsburgh

PA
United States

Seattle Children's Hospital 041 Seattle

WA
United States

St. Louis Children's Hospital 056 St. Louis

MO
United States

Doernbecher Children's Hospital 067 Portland

OR
United States

The Children’s Hospital at Montefiore 068 Bronx

NY
United States

Cleveland Clinic Children’s Hospital 077 Cleveland

OH
United States

Texas Children's Hospital 079 Houston

TX
United States

Nemours Children's Clinic 101 Orlando

FL
United States

Lucile Packard Children’s Hospital Stanford 112 Stanford

CA
United States

Golisano Children’s Hospital at the University of Rochester Medical Center 123 Rochester

NY
United States

Children's Hospital of New Orleans 136 New Orleans

LA
United States

Pediatric Nephrology of Alabama 159 Birmingham

AL
United States

Joe DiMaggio Children's Hospital 162 Hollywood

FL
United States