CARRA - Childhood Arthiritis and Rheumatology Research Alliance

CARRA Newsletter: March 24, 2017

President's Report
Yuki Kimura, MD

2017 has clearly brought many changes in our world, both internal and external to CARRA. Time will tell what the impact of political and economic forces will be on our organization, but there is one certainty: CARRA must prepare to be able to withstand the many challenges that we are likely to face in the next few years to continue and build on the progress and momentum that we have all worked to create in the last few years. Read more here.

 


Register Now for the 2017 CARRA Annual Scientific Meeting
Registration Deadline: April 17, 2017

Registration for the 2017 CARRA Scientific Meeting is now open! The meeting will be held from May 15-17, 2017 (Monday-Wednesday) at the new Marriott Marquis in Houston, Texas. Pre-conference meetings and courses (including Early Investigators, Fellows, Research Coordinators, and an Introductory Ultrasound Course) are open to CARRA members only, and will be held during the day on Monday May 15. The CARRA Registry Investigators & Coordinators Meeting will be held from 4:00-5:30 PM on May 15 and is open to CARRA Registry site investigators, coordinators, parents and patients. All CARRA Registry site personnel are strongly encouraged to attend this important meeting. The main CARRA meeting (open to all meeting attendees) will start at 6:00 PM that evening and will followed by our opening reception, sponsored by the Arthritis Foundation. The CARRA Annual Scientific Meeting will end at 5pm on Wednesday, May 17. As a reminder, the ACRs Pediatric Rheumatology Symposium (PRSYM) Meeting starts at 5:30 on that day at the same hotel. For more information and to register for the Annual Meeting, please visit the CARRA Annual Meeting website (https://carragroup.org/2017-annual-meeting). We look forward to seeing all of you at the meeting!


What Caught our Eye: Doctors Facing Borders
Tamar Rubinstein, MD, MS

A couple weeks ago, our administrator received an email that sent our division into panic. The title of the email was “URGENT,” in all caps, followed by three exclamation points. It was a warning of a possible draft of a new executive order that would limit entry into the US of individuals from yet another list of countries, this one including the country of origin of our first-year fellow. The past several weeks of drama and confusion over the recent executive order for a 90-day ‘travel ban’ of citizens from seven countries in the Middle East and Africa has put into relief an important sector of medical providers in the US: international medical graduates or IMGs. Read more here.


CARRA Registry Updates

CARRA Registry
The CARRA Registry is now enrolling new onset lupus patients, in addition to enrolling patients with JIA (either new onset, starting new medication, and all systemic and poly JIA). Currently, we have 2826 subjects enrolled.

STOP-JIA (Start Time Optimization of biologics in Poly-JIA)
     169 of 400 subjects enrolled

FROST (FiRst Line Options in Systemic JIA Treatment)
     5 of 200 subjects enrolled

PLEASE CONTINUE TO BE ON THE ALERT FOR NEW POLY JIA AND SYSTEMIC JIA PATIENTS if you are participating in STOP-JIA or FROST. Please remember to collect samples on STOP-JIA and FROST patients prior to starting treatment for the Precision Decisions to STOP JIA study.


Announcements and Reminders

CARRA Elections
Voting for the open Steering Committee Chair positions (Early Investigator, RAAC, SVARD, and TRTC) closes March 24 and ballots have been distributed to all members who are eligible to vote. The results will be announced on March 28. Nominations for RAAC Vice Chair, SVARD Vice Chair, TRTC Vice Chair, Publications Committee Chair are due Friday, March 31. Submit nominations here and visit the elections section of the CARRA website for more information.

CARRA Research Informatics Internship
Deadline for Preliminary Applications: April 7, 2017
CARRA is pleased to announce a new Research Informatics Training Internship intended to advance informatics-related research in Pediatric Rheumatology by increasing the pool of independent informatics researchers in our field. Through this internship, CARRA will fund up to two positions for up to two years, with the intent of enabling junior faculty and fellows in Pediatric Rheumatology to obtain additional training and project experience in clinical and/or bio-informatics. Internship start date is July 1, 2017. Click here for more details.

LFA Funding Programs
Deadline: April 10
The Lupus Foundation of America (LFA) is accepting applications for the 2017 Gina M. Finzi Memorial Student Summer Fellowship Program and the Career Development Award. This year, the award program reflects the LFA’s commitment to advancing pediatric research and supporting underserved communities. Click here for more information.

Data Sample and Share Applications
Deadline: April 15, 2017
Apply for data from the Legacy Registry and the current CARRA Registry. Data on JIA subjects are available from the new Registry. Members should visit the CARRA members-only website for more information. Submit your applications via the Data and Sample Share Portal.

PReS Travel Award
Deadline for Applications: April 28, 2017
CARRA is funding up to 3 travel grants for Early Investigators to attend the Pediatric Rheumatology European Society (PReS) annual meeting and PReS Young Investigator Meeting in Athens, Greece from September 13-September 17. This opportunity is open to all CARRA Fellow members and Early Investigators (finished fellowship in 2010 or later). This is an outstanding meeting and a great chance to present your work and network! Click here for more details and link to apply.


Arthritis Foundation JA Camps and 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.

Arthritis Foundation Local Leadership Boards
In communities nationwide, the Arthritis Foundation is working with local volunteers to build Leadership Boards to achieve our goals in fundraising, volunteer engagement, advocacy, juvenile arthritis and other pediatric rheumatic diseases, and help and support. To get involved on your Local Leadership Board, please contact your local Arthritis Foundation staff.