Observational Study of Pediatric Rheumatic Diseases: The CARRA Registry
Duke University
Summary
Continuation of the CARRA Registry as described in the protocol will support data collection on patients with pediatric-onset rheumatic diseases. The CARRA Registry will form the basis for future CARRA studies. In particular, this observational registry will be used to answer pressing questions about therapeutics used to treat pediatric rheumatic diseases, including safety questions.
Description
The original Childhood Arthritis \& Rheumatology Research Alliance (CARRA) Registry (Protocol Number: CRNT\_REGST01) was first established in 2010 to advance alliance infrastructure, facilitate expanded clinical and translational pediatric research, and transform the culture of pediatric rheumatology toward universal participation in research. This original CARRA Registry will be referred to throughout the protocol as the CARRA Legacy Registry. Through the creation of a sophisticated informatics infrastructure, provision of comprehensive site support and the engagement of families, patients, a…
Eligibility
- Age range
- Up to 21 years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: 1. Onset of rheumatic disease prior to age 16 years for JIA and onset prior to age 19 years for all other rheumatic diseases (see appendix A). 2. Subject (and/or parent/legal guardian when required) is able to provide written informed consent and willing to comply with study procedures. 3. Subject and/or parent/legal guardian is willing to be contacted in the future by study staff. Exclusion Criteria: 1\. Greater than 21 years of age at the time of enrollment.
Locations (82)
- University of Alabama at BirminghamBirmingham, Alabama
- Phoenix Children's HospitalPhoenix, Arizona
- Children's Hospital of Los AngelesLos Angeles, California
- Mattel Children's Hospital at University of California Los AngelesLos Angeles, California
- Stanford University Medical CenterPalo Alto, California
- Rady Children's Hospital San DiegoSan Diego, California