CARRA - Childhood Arthiritis and Rheumatology Research Alliance

CARRA Newsletter: July 2017, Issue 1

2017-2018 CARRA Interns Selected!

CARRA Registry Interns

Congratulations to Marinka Twilt (Alberta Children’s Hospital) and CJ Inman (University of Utah) for being selected as our two new CARRA Registry interns for 2017-2018. We are also excited to announce that our current interns, Mary Beth Son and Sarah Ringold, will continue for a second year. The CARRA Registry Internship is designed to immerse the selected investigator in the operational, leadership, and scientific aspects of the multicenter observational CARRA registry. This is a unique opportunity to interact intensively with the CARRA Registry leadership team, to learn skills and gain knowledge that will inform pediatric rheumatology research and change practice. CARRA funds at least one position annually for up to two years.

 

CARRA Research Informatics Intern

The goal of the CARRA Research Informatics Training Internship is to provide promising young investigators with research informatics training and mentorship. The goal of the internship is to enable the individual to become an independently funded researcher in bio- or clinical informatics, who will contribute back to the pediatric rheumatology community. Interns will conduct their own project which has value to CARRA and the CARRA Registry. CARRA funds each selected intern for up to two years.

Congratulations to Jon Hausmann (Boston Children’s Hospital) for being selected as CARRA’s inaugural Research Informatics Intern.


CARRA ELECTIONS: CARRA Fellow Co-Chairs!

Congratulations to newly elected CARRA Fellow Committee Co-Chairs Cuoghi Edens (Rainbow Babies Children’s Hospital) and Miriah Gillispie (Baylor College of Medicine). Cuoghi and Miriah will serve one year terms leading the CARRA Fellows group.


 


CARRA REGISTRY UPDATES

CARRA Opens Enrollment to all JIA Patients (and Rolls Out a New Logo!)

CARRA is now enrolling ALL JIA patients in addition to new onset lupus patients. Enrollment criteria:

JIA: Participants should have:

  • Symptom onset prior to 16th birthday
  • Diagnosed with any JIA category (regardless of diagnosis date or medication history)
  • Patient must be enrolled in the CARRA Registry prior to 21st birthday

SLE: Participants should have diagnosis of one of the following in the past 24 months:

  • SLE (≥4 SLICC criteria)
  • Lupus Nephritis
  • Acute or Chronic Cutaneous Lupus
  • MCTD
  • Sjogren’s Syndrome
  • Primary Anti-Phospholipid Ab Syndrome
  • Probable SLE (3 SLICC criteria)

215 of 400 STOP-JIA (Start Time Optimization of biologics in Poly-JIA) enrolled (13 with biosamples).
13 of 200 FROST (FiRst Line Options in Systemic JIA Treatment) subjects enrolled (3 with biosamples).
                                     3 of 450 PEPR patients enrolled
 

Please make it a priority to enroll all new poly JIA and systemic JIA patients in STOP-JIA and FROST if your site is participating. AND it is very important that we collect SAMPLES on these patients (prior to starting treatment if at all possible).
 

Congratulations to the study team at the University of Utah including principal investigator CJ Inman and study coordinators Suzy Jones and Jennifer Huntington for becoming the new top enroller for the CARRA Registry!

The CARRA Registry has a new logo and an updated brochure! Look for the new brochure to be shipped to participating CARRA Registry sites this August!

 


Announcements and Reminders

Annual Meeting Reimbursements are on Their Way
Travel reimbursements for the Annual Meeting have been mailed over the last couple of weeks. If you do not receive your check by Friday, July 21 or have a question about your reimbursement, please contact CARRA Meetings and Membership Manager, Nicole Dahms, at [email protected].

Call for Nominations Coming Soon
Interested in serving on a CARRA Committee? CARRA will be putting out calls for nominations for 1) Ethics Committee members and 2) Scientific Grant Review Committee members. Look for the announcements later this month!

ACR Save the Date
CARRA will be holding a brief meeting followed by a reception at ACR in San Diego the evening of Monday, November 6th.  More details to be provided soon!

CARRA Grant Deadlines

  • The deadline for the Large Grant LOI is less than 2 months away (9/1).
  • Large and Small grant applications are due less than 3 months away (10/1)
  • Our online grant submission system will be available prior to 9/1.  Stay tuned for updates!

Lupus Foundation of America Announcement
The 2017 Call for Nominations for two prestigious awards in the field of lupus research: 1) the Evelyn V. Hess, MD, MACP, MACR Award, and 2) the  Mary Betty Stevens, MD, Young Investigator Prize. See the LFA’s website for details and contact [email protected] with questions. The nomination period closes August 7th, 5pm EST.

DO YOU HAVE GOOD NEWS TO SHARE?
If you are a CARRA member and have a professional achievement (new grant awarded, a CARRA publication) you would like to share with our readership, please email the details to [email protected] with the subject “CARRA Newsletter Announcement for Consideration."


iPeer2Peer Mentorship Program
In partnership with Sick Kids, the Arthritis Foundation launches a pilot program for iPeer2Peer. More details here: www.arthritis.org/ipeer2peer

2017 JA Camps
Registration for many of our 2017 camp programs is still open! View our brand-new JA Camps website to browse our camps and register today! If you have additional questions, please contact your nearest Arthritis Foundation office. www.arthritis.org/JACamps

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.