CARRA REGISTRY

Overview

CARRA and the Duke Clinical Research Institute (DCRI) are collaborating to launch the second phase of the CARRA Registry, a registry of children and young adults with pediatric-onset rheumatic conditions such as juvenile idiopathic arthritis (JIA). The scope of the existing registry, the CARRA Legacy Registry, is being expanded to help researchers learn more about the progression of the disease and medication safety.

The new CARRA Registry provides additional opportunities for research through identification of subjects eligible for future studies and by serving as a data repository. The Registry is a cornerstone of CARRA and provides disease and treatment data on children with a variety of rheumatic diseases. CARRA aims to make it possible for all affected children in North America to have the opportunity to participate in meaningful and high quality clinical and translational research.

Leadership

Yukiko Kimura, MD

Yukiko Kimura, MD Chief, Pediatric Rheumatology Professor of Pediatrics Hackensack University Medical Center

Laura Schanberg, MD Professor of Pediatrics Duke University

 

Registry News

Registry Update February 3, 2017

CARRA Registry Stats
Enrollment: 2,560
8 sites have enrolled 1-5 patients
33 sites have enrolled 6-49 patients
16 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 274
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 217
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 177

STOP-JIA Stats:
Enrollment: 138
8 sites have enrolled 1 patient
19 sites have enrolled 2-4 patients
10 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children’s Hospital: 15
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 9
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 9
PI Shoghik Akoghlanian/SC Joanne Drew, Nationwide Children’s Hospital: 9

FROST Stats:
Enrollment: 4

FROST Sites:
PI Pamela Weiss/SC Jenna Tress, Children’s Hospital of Philadelphia: 2
PI Emily von Scheven/SC Bhupinder Badwal, University of California at San Francisco Medical Center: 1
PI Marilynn Punaro/SC Heather Benham, University of Texas Southwestern Medical Center Dallas: 1

Registry Enrollment

STOP-JIA Enrollment

FROST Enrollment

CARRA Registry Brochure

More Registry News