CARRA Newsletter-October 2018 Issue 1
They say time flies when you are having fun. Even so, it is hard for me to believe that three months of my tenure as President of CARRA are already behind me. There are many exciting things happening within CARRA, and I wanted to take a moment to highlight just a few of these.
First, I want to congratulate the sites enrolling patients in the Registry for a job well done- As of Oct 2018 we have over 6700 patients enrolled, with the registry collecting data on patients with JIA as well as a selection of SLE and JDM. In addition, we have successfully finishing enrolling the STOP-JIA comparative effectiveness study of the polyarticular JIA Consensus Treatment Plans (CTPs). Localized and systemic scleroderma are on the cusp of initiating enrollment and we are working plans to engage patients with other conditions.
In this Issue...
Second, I would like to highlight some of the events of the past few months that have impact on our mission and future activities. These have included:
These are exciting times at CARRA- our hard work is paying off with progress on many fronts. I hope you will join me in giving kudos to your colleagues who have worked so diligently to make these projects successful.
I am looking forward to seeing everyone who is able to come to the ACR Annual meeting in Chicago. Please join us at the CARRA meeting and the CARRA-AF reception on Monday evening starting at 6:30 PM CT at the Hyatt hotel adjacent to the convention center.
ACR is just a few days away and we are pleased to share that several abstracts that were supported by CARRA-Arthritis Foundation grants or other CARRA infrastructure are being presented during the meeting, Sunday, 10/21 - Wednesday, 10/24.
We've pulled together a listing.
Visit the CARRA website to learn more.
Download the Mobile App
The CARRA mobile app is full of useful information! Add sessions to your schedule, view the CARRA Meetings schedule, CARRA-Related Abstracts at ACR, Arthritis Foundation Sessions, and Pediatric Sessions at ACR.
CARRA's Activities at ACR
CARRA Fellows & Early Investigator Reception
CARRA-Arthritis Foundation Reception
ATTENTION NEWLY GRADUATED CARRA FELLOWS: Update your CARRA Membership Now and Transition to Pediatric Rheumatologist Member for Free!
For those Fellow Members who have recently graduated, thank you for being a part of CARRA during your Fellowship. We are pleased to offer you the opportunity to become a voting, Pediatric Rheumatologist member for the remainder of 2018 at no cost.
Continuing your membership as a Pediatric Rheumatologist member demonstrates your support of the pediatric rheumatology research community and allows you to fully participate in CARRA’s efforts while receiving the benefits of membership. Pediatric Rheumatologist members have full voting rights, are eligible for CARRA grants and travel awards, annual meeting travel reimbursement, and are may run for the various leadership positions.
NEWLY GRADUATED FELLOWS: To take advantage of this opportunity, simply follow the link below to provide your most current contact information. We will update our database with your new member type and updated contact information, and also add you to our CARRA Early Investigator group.
We look forward to continuing to work with you to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases.
Please congratulate these 2 CARRA Registry sites for their exceptional performance in the past few months:
- Akron Children’s Hospital (PI Kate Phillippi) - Since their site was activated on June 12th, 2018, they’ve already enrolled 57 patients in the Registry!
- Coordinator pilot grant awardee – University of Iowa Hospitals and Clinics (PI Polly Ferguson) has already enrolled 154 patients since this grant was awarded on 4.1.18. They’ve increased their site enrollment by 327% since receiving this grant!
Thanks to both sites’ study personnel for their hard work and commitment to making the Registry a success!
Enrollment Update (as of 10/12/18)
- October 19-24: ACR/ARHP Annual Meeting (Chicago)
- October 22: CARRA meeting at ACR; CARRA-Arthritis Foundation Co-Hosted Reception
- October 25-27: PeDRA Annual Conference (Denver)
- October 26-27: Kids Get Scleroderma Too (KGS2) Education Forum (Aurora, CO)
- November 30: Life Course of Lupus, New York, NY
- April 10-14, 2019: 2019 CARRA Annual Scientific Meeting, Louisville, KY
JIA Patient-Focused Drug Development (PFDD) Meeting Videos Now Available
The world’s largest network of arthritis patients – the Arthritis Foundation, and the largest network of pediatric rheumatologists – the Childhood Arthritis and Rheumatology Research Alliance (CARRA) hosted the externally-led Juvenile Idiopathic Arthritis (JIA) Patient-Focused Drug Development (PFDD) meeting in Washington, D.C. on August 2, 2018. Families from around the country, FDA staff, industry leaders, and researchers attended in person and virtually via webinar.
This meeting provided the U.S. Food and Drug Administration (FDA), drug developers, health care providers, academic researchers, and other stakeholders an opportunity to hear directly from patients, patient advocates and caretakers about the signs and symptoms that matter most to them. JIA parents and their families shared information about the impact of JIA on daily life, the symptoms that are most challenging, experiences with currently available treatments and the need for new and different treatments. To learn more about this meeting, listen to the recording.