Last month we advertised the new Assistant Scientific Director and JIA Vice-Chair positions. This month we are inviting you to apply for the Registry Co-PI and Registry Delegate positions. I encourage you to consider applying and to disseminate this information to potentially interested colleagues. Don't miss this opportunity!!
Emily von Scheven, MD, MAS
CARRA Registry Co-Principal Investigator (Co-PI)
Research & Registry Oversight Committee (RROC) Delegate
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The recent amendment to the CARRA Registry protocol includes consent changes that require the re-consent of all currently enrolled participants. Re-consent is essential to the future success of the Registry by allowing us to contact participants and/or families via text and email (rather than just telephone), which is critical to successful long-term follow-up efforts.
We have heard over the past few months that there have been considerable challenges with re-consenting participants in the midst of COVID, including IRB delays, deprioritized observational research, and time and resource constraints. Recognizing these obstacles, CARRA is extending the deadline for additional site payments tied to re-consent:
To further facilitate re-consenting, participants may be re-consented over the telephone or electronically rather than in-person (please refer to DCRI’s communications regarding requirements of electronic consent).
If you have questions or ideas about how to facilitate reconsent please reach out to Nick Rogall at [email protected].
CARRA has employed the help of an experienced biostatistician to work collaboratively with members who want to conduct research utilizing the Registry, but who have not been able to find the biostatistical support needed to make progress towards manuscript development and publication.
CARRA members will be able to apply online through the CARRA wiki. Dr. Tim Beukelman, the CARRA Registry Scientific Director, has created a video tutorial on how to access this new support service. Resources such as FAQs and detailed instructions are also available.
Click below to see the video!
Surpassing 10,000 JIA patients enrolled in the Registry is an incredible feat - one that would not have been possible without our patients, Registry site staff, and members. Thank you to everyone for your continued hard work and support of the Registry!