CARRA Newsletter - March 2019 Issue 1


CARRA Registry Retreat is a Success!

140 investigators and coordinators attended the inaugural CARRA Registry Retreat from Jan 27-28, 2019 in Orlando. There was active participation by all to discuss and brainstorm how we can all improve the Registry experience for sites, investigators, coordinators and participants. There were panel discussions and demonstrations for consenting, financial sustainability, long term follow-up program, among other topics. It was a truly valuable experience for all involved in the CARRA Registry. There were many terrific ideas, tools and suggestions. All are now being compiled and will be shared at the CARRA meeting.


In this Issue...

Registry Retreat Recap

2019 Annual Meeting

Cross Cutting Research Committee

2019 CARRA Elections

Walk to Cure Arthritis

RFA: Utrecht Summer School


Cure JM Foundation Updates

Registry Enrollment Updates

Upcoming Events

Arthritis Foundation Updates

2019 Annual Scientific Meeting Updates

Register NOW to Attend the 2019 Annual Scientific Meeting!

9 days left to register for the CARRA 2019 Annual Scientific Meeting! Join us at the Marriott Louisville Downtown from April 10 - 14, 2019. We hope to see you there!

Meeting Registration Deadline: March 15

CARRA will be hosting the following General Sessions for all meeting attendees:

CARRA Annual Scientific Meeting Opening Session
Welcome Remarks Thursday, April 11: 3:30 pm – 4:00 pm
Robert Fuhlbrigge, MD, PhD, Children's Hospital Colorado
Guy Eakin, PhD, Arthritis Foundation

Treat-to-Target Debate Thursday, April 11: 4:00 pm – 5:00 pm
Angelo Ravelli, MD, University of Genoa and Giannina Gaslini Institute
Dan Solomon, MD, MPH, Harvard Medical School

PROMIS/PROs Friday, April 12: 8:00 am – 9:00 am
Jim Witter (PROMIS) MD, PhD, FACR, National Institutes of Health (NIH)
Bryce Reeve (PROs) PhD, Duke University School of Medicine

Oral Abstracts Friday, April 12: 5:15 pm – 6:30 pm

Clinical Trials of Analgesic Medications in Pediatrics: Why is this so Challenging?
Saturday, April 13: 8:00 am – 9:00 am
Gary Walco, PhD, Seattle Children’s Hospital

Shark Tank Session Friday, April 13: 6:00 pm – 7:15 pm

Closing Remarks Friday, April 13: 7:15 pm
Robert Fuhlbrigge, MD, PhD, Children's Hospital Colorado

Schedule & Session Descriptions

Click here to see the schedule!

Click here to learn more about each session!

Hotel Reservation Deadline: March 11

For any questions relating to the Annual Meeting, please contact Jena Kendall, Meetings & Membership Manager, at [email protected] or 414-918-9822.

New CARRA Committee and Meeting: Cross Cutting Research Committee

The CARRA Steering Committee has approved the formation of a new research committee—the Cross Cutting Research Committee. This new research committee will accommodate current and future research activities focused upon issues pertinent to chronic rheumatic disease management across disease states. Of CARRA’s current workgroups, transition and mental health workgroups may be included in this committee. Potential future workgroups for which we know there is interest and which may fit in this committee include: telehealth research, reproductive health research, cardiovascular health research. As with other research committees, this new committee will have an elected Chair and Vice Chair who serve on the Steering Committee and will have access to CARRA resources. 

CARRA will be holding a breakfast meeting for this new committee at the Annual Meeting on Friday April 12, from 6:45-7:45 AM Eastern Time in the Bluegrass Room. CARRA will provide a conference call line for members who will not be at the Annual Meeting and who are able to participate remotely.

The goal of this meeting is to provide members from the current and potential future workgroups of the Cross Cutting Research Committee with the background of how and why this committee was established and discuss what will be expected from the future elected Chair and Vice Chair.  We encourage all members from current and potential future workgroups of this Cross Cutting Committee to attend this meeting. 

Stacy Ardoin, MD, will assist with interim leadership of this group and please feel free to reach out to her with questions at [email protected].

2019 CARRA Elections

CARRA Elections Round 2 Voting is Now Open

Round 2 includes the elections for the Steering Committee positions of JIA Vice Chair, Pain Chair, and Research Coordinator Network (RCN) Vice Chair. Voting will close on March 7 and results will be announced by March 14. The individuals elected to these positions will each serve a 3-year term on the CARRA Steering Committee starting 7/1/19.

JIA Vice Chair
Edward Oberle, MD, RhMSUS
Sarah Ringold, MD, MS
Matthew Stoll, MD, PhD, MSCS

Pain Chair
Susmita Kashikar-Zuck, PhD

RCN Vice Chair
Suzy Jones, BS, CCRP
Chelsey Smith, AAHA, CCRC, ACRP-CP

To view the full election timeline and Scope of Work for each position, please visit the Elections page on the CARRA website.

Voting ballots were distributed to eligible voting members on February 26. Pediatric Rheumatologist, Emeritus, and Sponsored Voting Members are eligible to vote for the positions of Pain Chair and JIA Vice Chair.  Research Coordinator Members are eligible to vote for the position of RCN Vice Chair. Associate Physician, Associate Health Care, Fellow and Trainee members are not eligible to vote for these positions. If you did not receive your voting ballot or have any questions, please contact Brian Mondragon Jones at [email protected].

Walk With Team CARRA!

The Arthritis Foundation has been a steadfast supporter of CARRA since its inception and is a major partner in support of our research to improve outcomes for children with rheumatic diseases. This spring, CARRA will be participating in the Arthritis Foundation’s Walk to Cure Arthritis events and we encourage you to join us!

  • If you have a walk team - Contact Vincent Del Gaizo [email protected] to link your current team to the CARRA National Team.  Your local event does not change. Money you raise locally will appear in your local area as it always does. The money will also count toward the CARRA National Team goal!  Nothing changes! 
  • If you do not have a local team - Contact Vincent and he will help you start a local team and link your local team to the CARRA National Team.  The event is super fun and a great way to engage your clinic and patient families! Please help us reach CARRA's goal of at least 5 new walk teams.  Click here to see a list of walk sites.
  • If you do not have a walk event in your area or you are unable to start a new team - Please consider donating to this CARRA National Team page and share this link with your friends, family and patient families.   

Our goal this year is to start 5 new walk teams.
Thank you for your support of CARRA and the Arthritis Foundation!

Reminder: 3rd Annual Utrecht Summer School CARRA Sponsorship Program

Now Accepting Applications!
Deadline: March 25, 2019

CARRA has announced an exciting opportunity for up to two early investigators to receive sponsorship to participate in this year’s Utrecht summer school program course entitled “Translational Medicine: Doing the Right Research Right.” Fellows with established translational research interests will also be considered for this opportunity. The course will take place July 7 – July 12, 2019 in Utrecht, Netherlands. The sponsorship will cover the 850 Euro tuition (which includes housing and lunches), round trip coach airfare and $250 for incidental expenses.

This course 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 Utrecht’s Summer School program’s website. This course is open to participants from a wide range of disciplines and will be led by a pediatric rheumatologist.

Check out the experiences from previous award recipients here.

For eligibility and application information, please visit the CARRA website.

If you have any questions about the program or applying for sponsorship, please contact the CARRA Grants Manager at [email protected].

These travel awards are made possible through the generous support of the Arthritis Foundation.

Celebrate WORD Day!

WOrld Young Rheumatic Disease Day
March 18, 2019

WORD Day, “WOrld Young Rheumatic Disease Day” will be an annual event that will take place on the 18th of March from 2019 onwards. WORD Day is jointly inaugurated by PReS (www.PRES.EU) and the parent/patient association ENCA (

The objectives of this day are to raise parental and professional awareness to these illnesses. By raising awareness of pediatric rheumatic diseases amongst health care providers will help to aid the process of diagnosis, especially of rarer diseases. WORD pediatric day is also directed at the wider public, since it is important to raise social awareness to the needs of children with rheumatic illnesses.

Local face to face awareness events, hospital websites and educational programs will be aired on both the local and international stage in a range of different countries. Diverse local events will be designed and implemented by a local organizing committees in each country, to be run in hospital, universities and public areas (e.g. schools, museums, town centers). These are anticipated to include information stalls, talks and performances given by patients, information and training events for healthcare professionals, ‘peer education’ workshops involving medical student organizations. In particular, WORD day will target doctors who are the first clinicians to come into contact with these patients (e.g. general pediatricians), parents, other health practitioners, educators. 

A number of assertive social media campaigns including the patient voice, patient organizations and charities, promotional educational videos, radio and TV interviews with patients and doctors will accompany these events, each directed at a specific audience. Social media accounts were launched in December 2018 and so far have reached 16,800 Facebook users, and made 15,700 Twitter impressions.


Leaflets and booklets on WORD Day and will be made available through pages on the PRES website.

For questions, please contact:

Dr Eve Smith
NIHR Academic Clinical Lecturer
Institute in the Park
Alder Hey Children's Hospital
University of Liverpool
Eaton Rd
L12 2AP
[email protected]

2019 Juvenile Myositis Care and Research Conference

Cure JM Foundation and Ann & Robert H. Lurie Children's Hospital of Chicago are hosting the 2019 Update on Juvenile Myositis Care and Research on Friday, June 21, 2019 from 7:30 am - 3:30 pm at Ann & Robert H. Lurie Children's Hospital in Chicago.

This free conference is open to all physicians and members of the medical community with a special focus on those in pediatrics, rheumatology, dermatology, and neurology.

Learning Objectives:

  • Identify best practices in diagnosing and treating patients with Juvenile Myositis (JM).
  • Apply latest developments in myositis research to clinical care.
  • Examine specialized management issues relevant to JM patients.
  • Discuss JM case studies to make treatment plans to optimize care.

This event is FREE, and includes breakfast and lunch, but registration is required. Registration details will be available at in the next two months.

2019 Request for Proposals

In 2019, Cure JM has committed to fund new research grants up to $75K/year for up to 2 years with preference for individuals who have at least 25% protected research time from their institution. We are requested proposals for advancing research to improve medical treatment, patient care, and work toward a cure for Juvenile Myositis.

Grant Application Process

A one-page letter of intent (LOI) is required 30 days before the deadline for full application and must contain the project title, a brief description of the proposed research, the name, address and email address of the Principal Investigators, and any persons who might have a conflict of interest in reviewing the proposal. The LOI should be submitted electronically to: [email protected]. The LOI is only to allow organization of the review process, and all projects submitting an LOI will be permitted to submit a full application. Grant applications can be submitted any time after March 30, when the RFP process opens.

Proposals should be submitted electronically as one single PDF file to: [email protected] and must be received by the submission deadline for applications stated in the research announcement timeline.

Further details can be found here:

  • March 30: Request for Proposals Begins
  • May 14: Letter of Intent Deadline
  • June 15: Application Deadline
  • September: Review of Submitted Applications Completed
  • October: Notification of Awards
  • November 1: Funding Start Date

Registry Enrollment Update (as of 3/1/19)

Important Upcoming Dates

Arthritis Foundation Updates


Winterhoff Arthritis Scholarship

The Arthritis Foundation is proud to offer a college scholarship opportunity. The Winterhoff Arthritis Scholarship is awarded annually to deserving students with arthritis or a related rheumatic disease who impact the arthritis community, serving as positive role models and leaders and live their best life, empowering others to do the same. The deadline to submit an application is March 29. For more information, please click here.

JA Camps & Family Days

The Arthritis Foundation has camps and family events across the country that provide kids and teens and their families the opportunity to network, learn and play with others in their local community. To learn more about how you can get involved, please contact your local Arthritis Foundation staff. Please refer patients to visit for more details. Teen retreat and family camps are offered in the fall throughout the country.