CARRA - Childhood Arthiritis and Rheumatology Research Alliance

CARRA Newsletter: April 20, 2017

ANNUAL MEETING: Last Chance to Register for the 2017 CARRA Annual Scientific Meeting
Registration deadline extended to April 20, 2017

The last day to register for the 2017 CARRA Scientific Meeting, and to reserve a hotel room at the reduced rate is now Thursday, April 20, 2017. Members should register online. All other attendees must complete a pdf form to be sent in via email, fax or US mail. Please visit the CARRA Annual Meeting website for needed information. Email [email protected] with any questions. Additional Annual Meeting announcements are below. We look forward to seeing all of you at the meeting!


What Caught my Eye...and Provoked my Paranoia and Propensity to Rant
Kenneth N. Schikler, MD

In the January 2017 issue of Journal of Pediatrics, Morris et. al. report on their findings in 1584 Australian youth age 14 years who were part of a longitudinal pregnancy cohort between 1989 and 1991 who were evaluated using the Beighton scoring system and a range of other factors including musculoskeletal pain status in “Hypermobility and Musculoskeletal Pain in Adolescents."

Their findings might make us reconsider what the appropriate Beighton score might be significant regarding the assignment of Generalized Joint Hypermobility (GJH), and if we might base it on gender and sexual maturity ratings (SMR). The authors also discuss how gender and SMR might alter parts of the scoring system (placing palms to floor). Read more here


CARRA ELECTIONS

Round 1 Results—Congratulations!
The results for Round 1 of the CARRA elections for open Steering Committee Chair positions are in. Congratulations to Erica Lawson (newly elected as Early Investigator Chair), Suzanne Li (re-elected as SVARD Chair), Peter Nigrovic (re-elected as TRTC Chair), and Jennifer Woo (re-elected as RAAC chair).

Round 2—Voting Open until April 28
Voting for the rest of the open elected positions (Publications Chair, RAAC Vice Chair, SVARD Vice Chair, and TRTC Vice Chair) is open until April 28. Ballots have been distributed to all members who are eligible to vote—this includes voting members (pediatric rheumatologists and sponsored voting members) and study coordinators. Study coordinators may only vote for the RAAC Vice Chair position. Click here to view the candidates and email [email protected] if you did not receive your ballot. The results will be announced on May 2.
 


CARRA REGISTRY UPDATES

CARRA Registry is Now Enrolling Lupus Patients
The CARRA Registry is excited that we are now enrolling new onset lupus patients, in addition to enrolling patients with JIA:

  • JIA: Participants should have ≥1 of the following: Systemic JIA; History of 5 or more cumulative affected joints; Newly starting methotrexate or biologic; New JIA diagnosis (<6 months)
  • 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)

Currently, we have 2926 subjects enrolled!

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

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

Be on the alert for new poly JIA and systemic JIA patients to enroll if you are participating in STOP-JIA or FROST, and remember to collect samples on enrolled STOP-JIA and FROST patients prior to starting treatment if at all possible.


CARRA STAFFING UPDATES
CARRA welcomes Brian Mondragón Jones, CAE, Director of Administration, and Nicole Dahms, Meetings and Membership Manager. You will be meeting them both soon at the Annual Meeting in Houston! Jason Jones, CARRA’s Director of Research Operations, accepted a position with industry and his last day with CARRA was April 3. We will be hiring additional research support in the very near future. We wish Jason all the best in his new role, with gratitude for the contributions he has made to CARRA. Kelly Mieszkalski will continue in her role as Executive Director.


Announcements and Reminders

ANNUAL MEETING ANNOUNCMENTS

CARRA Members—need a roommate? CARRA members looking for roommates for CARRA and/or PRSYM should visit the CARRA members-only portion of the website (see https://carragroup.org/carra-membership/carra-members-only-collaboration-site for instructions on how to login), where we have posted a link to a “roommate finder google sheet”. Members may also email [email protected] to request access to the google sheet.

CARRA Wiki Help
Chris Gentle will be on site at the Annual Meeting on Tuesday, May 16th and Wednesday, May 17th to help answer your questions about the members-only website (wiki.carragroup.org). If you have questions about the members-only website or would like an introduction to its features or help structuring your part of the web site then you should book time to meet with Chris. Send him an email at [email protected] with your preferred time and Chris will arrange a time to meet and help you get the most out of the members-only site.

DCRI Help Desk
DCRI CARRA Registry Staff will be at the Annual Meeting and want to help you with your questions and/or provide you with extra assistance on any CARRA Registry issues. Please look for their table in the exhibit area. Come by during breaks or schedule a one-on-one meeting by emailing [email protected] to set up a time.

Bring Your Dancing Boots!
We have arranged for dance instructors to teach us how to country-western line dance Tuesday night at the CARRA dinner. Bring your cowboy/cowgirl boots or your dancing shoes for some post-dinner fun!

FUNDING OPPORTUNITIES

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.

CURE JM Request for Proposals
LOIs due May 15, 2017
Applications due June 15, 2017
The Cure JM Foundation (Cure JM) announces its Request for Proposals for 2017 for advancing research to improve medical treatment, patient care, and work toward a cure for Juvenile Myositis. Grants are made in collaboration with CARRA. In 2017, Cure JM has committed to fund 2-4 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. Click here for more information and links to online applications.

New CARRA Grant Deadlines
CARRA has modified some of our grant deadlines as follows:

  • Small Grant awards of up to $25k each will be offered 2 times per year. Submission deadlines are now October 1 and March 1.
  •  Large Grant awards of up to $50k each will be offered once per year. LOIs are due September 1 and applications are due October 1.
  • Publication Support grants of up to $10k each will still be awarded on a rolling basis. Up to 5 will be awarded per year.
  • A new Fellow research grant will be offered once a year, with a deadline of March 1. More details will be provided at the annual meeting.

CARRA FUNDING AWARD ANNOUNCEMENTS

CARRA Small Grants
Our second round of Small Grants were evaluated and scored through a peer review process, and the CARRA Executive committee, along with Guy Eakin (SVP Scientific Strategy, Arthritis Foundation), made the final funding determinations.

Thirteen new small grants of up to $25k each were awarded this month. Congratulations to Deirdre De Ranieri (University of Chicago), Jonathan Hausmann (Boston Children’s Hospital), Linda Hiraki (University of Toronto - The Hospital for Sick Children), Amer Khoja (Lurie Children’s Hospital), Susan Kim (UCSF Benioff Children’s Hospital), Lily Lim (University of Manitoba), Sherene Mason & Samitri Dogra (Connecticut Children's Medical Center), Eyal Muscal (Texas Children's Hospital, Baylor College of Medicine), Alysha Taxter (Wake Forest Brenner Children's Medical Center), Melissa Tesher (University of Chicago, Comer Children's Hospital), Marinka Twilt (Alberta Children's Hospital), Patricia Vega-Fernandez (Emory University), and Yongdong (Dan) Zhao (Seattle Children’s Hospital). Click here to view the complete list of recipients along with their project titles.

Utrecht Travel Sponsorship Awardees
CARRA is pleased to announce that Maya Breitman (MetroHealth) and Theresa Wampler Muskardin (Mayo Clinic) were recently chosen as the recipients for CARRA sponsorship to Utrecht’s Summer School Program. They will participate in 5 day course in July in Utrecht entitled “Why Translational Medicine Fails – And What to do About it.”

CONGRATULATIONS TO CARRA MEMBER RAE YEUNG

Congratulations to CARRA member and PI of Precision Decisions to STOP JIA, Rae Yeung (Toronto Sick Kids) and co-lead Nico Wulffraat (University Medical Center Utrecht) for receiving an $8 million grant from the Canadian Institutes of Health Research (CIHR), ZonMw (the Netherlands Organisation for Health Research and Development) and Reumafonds (the Dutch arthritis foundation). The grant will create the UCAN CAN-DU network which aims to develop genomic tests to determine individualized therapy for children with arthritis. Click here for more information about this exciting award.

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."


2017 JA Conference
Save The Date for the Arthritis Foundation's 2017 National Juvenile Arthritis Conferences! 2017 JA Conference Houston, Texas – July 13-16, 2017 and 2017 JA Conference Indianapolis, Indiana – August 10-13, 2017. Early Bird Registration is now OPEN! Visit www.kidsgetarthritistoo.org for more information.

Webinar for Parents
Join us for two upcoming webinars: Backed by Science: Complementary Therapies for Arthritis on April 26, 2017 at 7:30 pm EST and Staying Active with JA: Risks and Rewards on May 25, 2017 at 7:30 pm EST. For more information and to register visit www.kidsgetarthritistoo.org/resources/webinars.

2017 JA Camps
Registration for many of our 2017 camp programs are now 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