CARRA Newsletter - February 2020 Issue 2



General Session Highlight: Panel on Pediatric Drug Development

Tuesday, April 28
3:30 pm – 5:00 pm

The Pediatric Drug Development Panel Discussion at the CARRA annual meeting will showcase stakeholder perspectives on how drug development and authorization can be accelerated for pediatric rheumatic diseases. We are at a critical juncture with the number of new products accelerating exponentially at the same time that the numbers of pediatric patients eligible and willing to participate in randomized placebo controlled studies is diminishing. Although many effective therapies have been approved, there continues to be a pressing need for more and better treatments for our patients. In this session, representatives from the FDA and EMA, and an industry pediatric drug development expert will give short presentations followed by a panel discussion about approaches such as extrapolation from adult studies and Bayesian analytic approaches to overcome these issues.

In this Issue...

2020 Annual Scientific Meeting

Utrecht/Eureka Travel Award

Publications & Ethics Committee Call for Nominations

Early Investigator Committee Runoff Election Results

VERITY Award Recipients

Registry Update

Arthritis Foundation Updates

Important Upcoming Dates

  • Suzette Peng:  Examples of Applying Bayesian Statistics to Support Drug Approval in Children
  • Richard Vesely:  Filling Unmet Needs of JIA Patients: Using Extrapolation and Other Methods in Europe
  • Robert “Skip” Nelson:  Innovative Uses of Extrapolation and Bayesian Statistics Drug Development in JIA and Pediatric Rheumatic Diseases
  • Panel Member:  Lily Mulugeta

For more information about the speakers, please visit the CARRA website.

Annual Scientific Meeting Quick Links

Meeting Registration (closes April 1)

Schedule & Session Descriptions

Housing (closes April 1 or until room block is full)

Travel & Travel Support

Patients & Caregivers

For additional questions about the Annual Scientific Meeting, please contact Gretchen Ponzer, Meetings Manager, at [email protected] or 414-918-9822.

Thank you to CARRA’s partner, the Arthritis Foundation, for sponsoring the CARRA Annual Scientific Meeting.                         

Utrecht/Eureka 2020 Travel Award

Application Deadline: March 23

CARRA is offering an exciting opportunity for up to 3 CARRA Early Investigators to receive sponsorship to attend the 2020 Utrecht Summer School translational research course, “Translational Medicine: Doing the Right Research Right”, in Utrecht from July 12-17, 2020.

This course, run by faculty of Utrecht University and the Eureka Institute, tackles the intrinsic difficulties of effective translational medicine in rare and orphan diseases and is meant for early stage researchers with an interest in this field. A full course description can be found on the Utrecht Summer School program website here. This course is open to young or early faculty from a wide range of disciplines. Fellows with established translational research interests will also be considered for this opportunity.

New This Year: Challenging the Future for Pediatric Rheumatology!

In addition to the research course, CARRA, PReS and UCAN-CANDU have agreed to support Early/ Young Investigators to meet for an extra day (Saturday, July 18) to work on personal development plans and brainstorm ideas for collaborative research projects guided by Eureka Institute faculty and CARRA, PRES and UCAN-CANDU senior clinician scientists.  Projects arising from this activity will receive priority consideration for a 2021 joint CARRA-PReS RFA that will support the development of projects from cross-organizational collaborative groups.

For more information about this opportunity, including application information, eligibility requirements, and link to submit your application, please visit the CARRA website. If you have any questions about the program or applying for sponsorship, please contact Brian Mondragón Jones at [email protected].

This opportunity is made possible via the generous financial support of the Arthritis Foundation.

Call for Nominations: Publications Committee Chair & Ethics Committee Members

Nomination Deadline: March 16

These open positions provide an excellent opportunity to be more involved with CARRA while cultivating the benefits of being part of our thriving organization and helping shape the future of the profession.

The CARRA Elections Committee seeks nominations for the following CARRA Committee positions: 

1Position receives 5% salary support


March 16   Nominations Due (by 8pm ET)  
March 30   Nominee Applications Due (by 8pm ET)
April 6    Voting Opens
April 20   Voting Closes
April 23   Elected candidates announced to the membership


Read More

If you have any questions about the election and nomination process, please contact Annie Lindenberg at [email protected].

Early Investigator Committee Vice Chair Runoff Election Results

Congratulations to our recently elected Early Investigator Committee Vice Chair, Sabrina Gmuca! Her term for this position is July 1, 2020 - June 30, 2023.

Thank you to all the candidates who participated and to everyone who voted!

2020 Travel Award Recipients

VERITY (Value and Evidence in Rheumatology using bioInformaTics, and advanced analYtics) is a NIAMS-funded P30 research program awarded to Brigham and Women’s Hospital. The next VERITY course is Tuesday, May 12, 2020 to Friday, May 15, 2020, in Boston, MA. The course is aimed at clinical investigators pursuing rheumatic disease epidemiologic and patient-oriented research. Course attendees will consist of early-stage (typically residents, fellows, or junior faculty) investigators pursuing clinical/patient-oriented/epidemiologic research studies in rheumatic and musculoskeletal diseases. Attendees will develop or refine a research protocol or specific aims for a grant proposal during the course

Through a partnership with Brigham and Women’s Hospital and Harvard Medical School, CARRA is able to select one member to receive full travel support and participate in the VERITY/Brigham Course in Rheumatology Clinical Research in Boston, MA at Brigham and Women’s Hospital. Funding for this travel award is provided by NIAMS. The 2020 recipient for the full travel award is Patricia Vega Fernandez.

Patricia Vega Fernandez

Cincinnati Children's Hospital Medical Center


CARRA also selected several applicants to receive partial sponsorship to participate in the VERITY/Brigham Course. Funding for this travel award is supported by the Arthritis Foundation. The 2020 recipients for partial travel support are Nicole Bitencourt, Jessica Bloom, and John Bridges.

Nicole Bitencourt

UT Southwestern Medical Center
  Jessica Bloom

University of Colorado/Children's Hospital Colorado
  John Bridges

Children's of Alabama/University of Alabama Birmingham


Congratulations to the 2020 recipients!

CARRA Registry Update

As of February 14, CARRA has enrolled 10,235 patients in the CARRA Registry, including:

  • 8,965 patients with JIA
  • 726 patients with SLE and related conditions
  • 179 patients with JDM or JPM
  • 39 patients with scleroderma

Other highlights include:

  • 399 biosamples have been collected!

Thank you to all of our CARRA Registry sites for all of your hard work!  

Arthritis Foundation Updates


Save the Date!
A Mandate for Action: Findings from the Arthritis Foundation INSIGHTS Program
Tuesday, March 10: 12:00 pm – 1:00 pm
Washington, D.C.

In cooperation with the Congressional Arthritis Caucus, join the Arthritis Foundation at this special briefing as we unveil a groundbreaking new report from our patient INSIGHTS program. We'll reveal the stories behind the more than 18,000 survey responses from people with arthritis around the country. The report paints a dire picture of the experiences of people with arthritis and demands swift action from federal policymakers. Change is needed now to address America's number one cause of disability. Please RSVP by Friday, March 6 to Stephanie Livingston at [email protected].

JA Families Online Community

The Arthritis Foundation’s LIVE Yes! Online Community offers 24/7 support and education for parents/caregivers of kids and teens with arthritis and related childhood rheumatic diseases. The JA Families discussion forum connects parent/caregivers to the most powerful source of support for families living with the daily struggles of JA – each other, and there is even a place to ask questions directly to a Rheumatologist. Over 300 questions have been answered by Health Care Providers in our “Ask the Professionals” discussion forum. Register or login to the Online Community by visiting Once logged in click “Join a Discussion” to see all discussion forums.

Important Upcoming Dates