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:
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). 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].