News

CARRA May 2021 Newsletter - Issue 1

 

Research Spotlight: CARRA AAV Workgroup Publishes CTP

 

  Led by Vidya Sivaraman, MD (Nationwide Children's Hospital), CARRA’s AAV workgroup published the    below CTP.

There is no standardized approach to the treatment of  pediatric ANCA-associated vasculitis (ped-AAV).  Because of the rarity of ped-AAV, randomized trials have not been feasible. Members of the AAV workgroup (housed within CARRA’s Rare Disease Committee) developed consensus treatment plans (CTPs) for severe ped-AAV to enable future study.

Face-to-face consensus conferences identified treatment strategies for remission-induction and remission-maintenance and outcomes to be measured over time. A random sample of CARRA membership voted acceptance of the CTPs for remission-induction and remission-maintenance with a 94% and 98% approval respectively. These CTPs were, in principle, accepted by CARRA-wide membership for comparative effectiveness evaluation in a long-term registry. Click here to read the CTP.

“ANCA-associated vasculitis is one of the most severe conditions we encounter in rheumatology, with life- and organ-threatening disease common, and yet there is no standardized approach to the management of these patients because, in part, it is so rare. The authors of this CTP have done tremendous work in getting us one step closer to standardization of care and being able to study outcomes of these treatments. The strength of this approach is that it is consensus-based; that is, the suggested treatment strategies reflect what CARRA members have agreed on as pragmatic. I’m excited to see what comes out of this work as it will, no doubt, have a huge impact on our care of these children.”   – Jay Mehta, MD, MS, CARRA Rare Disease Committee Chair (The Children’s Hospital of Philadelphia)


VERITY Pilot & Feasibility Research Award Applications
 due May 28, 2021    

This award is a NIAMS-supported $20,000 grant that is aimed at providing seed funding for new projects as well as offering an opportunity to the VERITY Research Community to develop skills in proposal preparation.

All applicants must be a member of the VERITY research community.  The selection committee will favor VERITY young investigators (rank of Assistant Professor or below) who have not been awarded an R01 grant or equivalent. Previous VERITY P&F awardees include, Aleksander Lenert, MD, University of Iowa Hospitals and Clinics, Lily Li, MD, Brigham and Women’s Hospital, and Vanessa Kronzer, MD, MSCI, Mayo Clinic.

 

The 2021 award application is due Friday, May 28, 2021, at 5:00PM ET. If you have any further questions, please contact Jackie Stratton at [email protected]

Click here to submit an application and learn more.


ACR Convergence Abstracts due June 1, 2021

ACR Convergence, the ACR's annual meeting, is currently accepting abstracts for the 2021 meeting. Accepted abstracts submitted by rheumatologists and health professionals from around the world will be displayed in an international venue and published in an online supplement of the Arthritis & Rheumatology journal.

In accordance with CARRA policies, CARRA members must submit all abstracts to the CARRA Publications Committee prior to submitting to ACR. Please allow 7 days for review by the Publications Committee.

Click here for the complete policy and deadlines for submitting a publication for review.


News and Notes

Three Upcoming CARRA Research and Registry Oversight Committee (RROC) and Registry Leadership Positions

 

  • The CARRA Registry Co-Principal Investigator (Co-PI) will work with Registry leadership to address operational issues and support partnership development with pharmaceutical organizations. Alongside other leaders, the Co-PI will provide direction and guidance for the Registry.
  • The CARRA Registry Assistant Scientific Director (ASD) will help drive the Registry’s research direction by providing scientific input on analyses and reports and has a crucial role in grant and business development.
  • The RROC Delegate serves as a non-voting member of the RROC. Experience gained in this position may serve as a bridge to future leadership roles.  

Requests for applications will be posted on May 10th with further information and requirements, with letters of intent due by May 24th for the ASD position and June 14th for the Co-PI position. If you are interested in expanding your commitment and work with the Registry, we encourage you to apply for the above roles.

 

Power Hour Recap: Critical CARRA Registry Data: Data Elements
 and Event Reporting

 

The Research Coordinator Network Chair and Vice Chair, Mary Ellen Riordan and Chelsey Smith, hosted the latest Registry Power Hour webinar, Critical CARRA Registry Data: Data Elements and Event Reporting. Specifically helpful for Registry Coordinators, this session covered important data to capture during Registry visits, an overview of data reports, and information on SAE & ESI reporting in the time of COVID-19. Watch the recording of the webinar here.

 

CARRA Registry Stats (as of 4/16/2021)   

Reaching 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!

Total: 11,343 patients enrolled + 651 Biosamples collected!


 

 

 


Important Dates and Deadlines