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CARRA Newsletter-October 2018 Issue 1

President's Message

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...

President's Message

CARRA at ACR 2018

Graduating Fellows - Membership Transition

Registry Update

Upcoming Deadlines

Arthritis Foundation Updates

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:

  1. New Approaches to Evaluate the Efficacy and Safety of Therapeutics for Juvenile Idiopathic Arthritis (JIA): A CARRA sponsored Discussion: This CARRA organized meeting brought together stakeholders (CARRA, Arthritis Foundation, patient/family advocates and international pediatric rheumatologists) with regulatory agencies (FDA and EMA (European Medicines Agency)) and pharmaceutical industry representatives. The objective of the meeting was to discuss the limitations of current clinical trial designs in fulfilling the need for the timely authorization of new medications for JIA and to propose solutions such innovative clinical trial designs using outcome measures that are more meaningful. The feedback from participants was very positive, and results of this meeting will be submitted for publication in a joint manuscript in the near future.
     
  2. Externally-led FDA JIA Patient Focused Drug Development Meeting (PFDD): Jointly organized by the Arthritis Foundation and CARRA, this meeting provided an opportunity for patients, caregivers and other JIA advocates to share their perspectives with the FDA, drug developers, healthcare providers and other stakeholders. Patients and caregivers described the impact of JIA and its treatment(s) on their daily lives, and highlighted the need for improved access to current treatments as well as patient-friendly approaches to investigation/ approval of new therapies. You can view a part of the PFDD conference at https://www.youtube.com/watch?v=8oDhqlfcMJI and a video recording of the entire day will be available soon. Be prepared with tissues as the emotions run high at times and the insights provided were wake-up call to everyone.
     
  3. CARRA-Arthritis Foundation Research Coordinator Pilot program: This program, new in 2018, is designed to see if start-up funds to help hire a research coordinator can assist sites in increasing enrollment and data entry in the CARRA Registry. Eight sites were selected and initial results are highly encouraging- showing a 200% increase overall in enrollment over the first 3 months of the program. It helps to have help
     
  4. CTPs, Comparative Effectiveness Research and Clinical Trials: In addition to the successful completion of enrollment in the STOP-JIA study, highlights on the research front include: initiation of the anaSTILLs study- a registration study of anakinra in systemic JIA and Still’s Disease; continuing enrollment in the FROST study of the systemic JIA CTPs; close to complete enrollment of the PEPR study validating the PROMIS Patient Reported Outcomes in JIA and SLE; initiation of the PROMOTE study of methotrexate pharmacogenomics; and preparations to launch LIMIT-JIA, a new PCORI funded randomized trial of abatacept to prevent uveitis and extension in oligo-JIA. Go to the CARRA website to see additional exciting news about our research--CARRA is truly moving the bar forward in establishing an evidence base for care of our patients.

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.

Yours Sincerely,
Rob Fuhlbrigge, MD, PhD
President, CARRA Inc.


CARRA Related Abstracts at ACR

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.

Visit the CARRA website for information on how to download the app.


CARRA's Activities at ACR

CARRA Fellows & Early Investigator Reception
(Open to CARRA Fellow, EI, and SC members)

Sunday, October 21
6:30-9:00 pm

Hyatt Regency McCormick Place
Jackson Park D
First Level

CARRA Meeting
(Open to all attendees)

Monday, October 22
6:30-7:30 pm

Hyatt Regency McCormick Place
Grant Park Room
First Level

CARRA-Arthritis Foundation Reception
(Open to all attendees)

Monday, October 22
7:30-10:00 pm

Hyatt Regency McCormick Place
Prairie Room
Second Level

Let us know you're coming!

         


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.

Yes, I’d Like to Transition to a full Pediatric Rheumatologist Member of CARRA

We look forward to continuing to work with you to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases.


CARRA Registry Updates

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)


Important Upcoming Dates

 

RSVP at: http://2018kgs2.sclerodermatristate.org/


Arthritis Foundation Updates

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.

Watch Part One            Watch Part Two