CARRA | Overview
What is CARRA?
Boston Children's Pediatric Rheumatology Program is proud to participate in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry — a broad, information gathering study that will help shape the future of pediatric rheumatology care. The primary aim of this project is to compile as much information as we can about our existing patients, their treatment plans, and their outcomes. Data is then de-identified and shared with a group of over 60 other pediatric rheumatology practices across the country. By sharing our data, researchers are better able to identify trends and patterns that wouldn’t be obvious if everyone worked independently. For example, researchers may notice that one group of patients greatly improved with a particular intervention while others did not. Identification of such trends will help guide target areas of future among CARRA Group researchers.
What is involved?
Most of the information we need to complete a study visit is already in the Electronic Medical Record (EMR), and therefore there are no study specific visits. Rather, patients will be enrolled and followed at their regularly scheduled clinic visits. At six-month intervals, we will ask our patients to complete a five-minute questionnaire to let us know how they rate their overall health, joint pain, and disease activity. Participants may additionally consent to provide a biosample for research purposes.
How do you participate?
Most of the information we need to complete a study visit is already in the Electronic Medical Record (EMR), and therefore there are no study specific visits. Rather, patients will be enrolled and followed at their regularly scheduled clinic visits. At six-month intervals, we will ask our patients to complete a five-minute questionnaire to let us know how they rate their overall health, joint pain, and disease activity. Participants may additionally consent to provide a biosample for research purposes.
Recruitment contact name: Johnathan Dallas
Recruitment contact phone: 617-919-1462
Recruitment contact email: johnathan.dallas@childrens.harvard.edu
For the most up to date information about the CARRA Group, its studies, and its publications, visit carragroup.org.