CARRA is sponsoring the new COVID-19 Global Pediatric Rheumatology Database
The newly formed COVID-19 Global Rheumatology Alliance has started a registry for improving surveillance of SARS-COV-2 and COVID-19 in individuals with rheumatic conditions. CARRA is an official supporter of this effort and as of today, March 30, is introducing a new, online COVID-19 database for pediatric patients with rheumatic and related autoimmune diseases.
As part of this effort, CARRA is doing the following:
CARRA Registry subjects. Subjects who are currently enrolled in the CARRA Registry, who test positive for SARS-CoV-2, can now have this reported as an Event of Special Interest (ESI) in the registry. As with any ESI report, sites will be paid for entering these.
Patients not already enrolled in the CARRA Registry. CARRA has sponsored a new, pediatric-specific data collection effort, the COVID-19 Pediatric Rheumatology Database for reporting of all patients with any type of pediatric rheumatic diseases, including inflammatory brain diseases and primary autoimmune eye disease, under 19 years old (patients >=19 years old with these conditions can be reported here). This study has been approved by the Boston Children’s Hospital IRB on an expedited basis, with waiver of informed consent and authorization. More information about this study is available here and you can register and provide data for the study here.
Patient self-reporting. CARRA is actively working on a number of different mechanisms for patients and families impacted by COVID-19 to report on their own. CARRA will be releasing more information very soon on these efforts.
We understand how challenging the times are now and appreciate whatever time and effort you are able to spare to contribute to these surveillance efforts. We very much hope that these approaches will enable all of us to rapidly improve our understanding of the impact of COVID-19 and approaches to treating our patients, as well as many others.
We welcome your questions, comments, and suggestions. If you have any general questions or input about CARRA’s COVID-19 research efforts, feel free to email Natalie Aumann, Research Director at CARRA, at [email protected]. If you have any comments or questions related to a specific project mentioned in this announcement, please use the contact information below:
CARRA Registry COVID-19 reporting: your site contact at the Duke Clinical Research Institute CARRA Registry coordinating center or Anne Dennos ([email protected])
COVID-19 Pediatric Rheumatology Database: For any questions not covered in our HOW TO and FAQ section, feel free to submit a comment or question to us via email.
Patient self-reporting. Stay tuned! If you are interested in collaborating on this project, please email [email protected]