CARRA June 2021 Newsletter - Issue 1


Registry Open Positions

CARRA Registry Co-Principal Investigator (Co-PI)
Letter of Intent (LOI) due June 14, 2021

Research & Registry Oversight Committee (RROC) Delegate
Applications due July 16, 2021

Submit LOI Apply Now

CARRA Registry Re-consent
Deadline JULY 1, 2021

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:

  • $75 for each participant re-consented before 6/1/2021.
  • $50 for each participant re-consented between 6/1/21 – 7/1/21.
  • Sites will receive payment twice a year directly from CARRA. Payment confirmation will be triggered upon upload of the re-consent documents into RAVE and completion of the new opt in/opt out check boxes for text, email, and health ID linkage in the Contact Database.
  • Payments will be over and above the standard site payments issued from DCRI.

‚ÄčTo 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].

Access to Biostatistician
CARRA Members Only!

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!

11,454 patients enrolled + 678 Bio samples collected

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!

Dates and Deadlines