News

CARRA Registry Re-consent Deadline Extended

 

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 deadlines 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). A webinar on consenting best practices will be open for all site staff and investigators to attend on 3/22/21 from 4-5pm EST to serve as another resource to assist with challenges of e-consent/re-consent 

Thank you for your continued efforts to improve the CARRA Registry.

If you have questions or ideas about how to facilitate re-consent please reach out to Nick Rogall at [email protected].