Newsletter September 23, 2016  

President's Message

CARRA | President's September 2016 UpdateTo follow Laura Schanberg as President of CARRA is a daunting task!  Under Laura’s leadership, we successfully enrolled the CARRA Legacy Registry, formed a 501c3 organization replete with a Board of Directors, an External Advisory Council, and new by-laws. We have a new website and a partnership with the Arthritis Foundation. We funded and launched the new CARRA Registry, began the first CTP comparative effectiveness study, and are working with Novartis and Roche on post marketing surveillance. CARRA is a part of PARTNERS, a patient-powered research network and began incorporating patient engagement in research. The 2016 annual meeting was a tremendous success, had a record attendance, and the energy was palpable. That energy continues with work groups pressing ahead on major initiatives. There are roughly 15 publications in progress. Laura’s contributions are too numerous to list, but I am honored to follow her. I look forward to all we can achieve together over the next 2 years.
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What Caught Our Eye

Some breast milk a day keeps the IVIG away?
By Tamar Rubenstein, MD

Tamar Rubenstein, MDPerhaps you missed the New York Times article, published in October 2015, “Overselling Breast-Feeding” or the firestorm that erupted afterwards. I didn’t. I was up nursing my newborn on our first week home and reading resultant Facebook posts, emails, and even an article one of my friends had written. I stayed pretty silent from my glider and Boppy (a C-shaped nursing pillow), and told myself that I could comfortably keep to the sidelines for this one and let my general peds friends handle the unenviable job of correcting some of the more inflamed and misinformed comments. But now, two recent articles in rheumatology are part of the library of evidence on the benefits of breastfeeding. Studies from France and Japan show protective effects in Ankylosing Spondylitis (AS) and Kawasaki Disease, respectively.
Read more…
CARRA News

Grant Opportunities
In round one of CARRA’s small grant funding, we providing 17 grants totaling $269,000, and we have now opened the application process for two large CARRA grants ($50K each), a second round of small grants (up to $25K each) and up to 5 grants ≤ $10K each). The ≤ $10,000 grants are designed to pay for analyses leading to publications of CARRA data. We are excited to offer these resources to our membership. Please refer to the CARRA website for more details.

PLEASE NOTE: Large grant applications ($50K) are now due November 1, so submit your LOI by October 1 to Jason Jones at [email protected]. This is a change and provides CARRA members with a few more weeks in which to submit an application.

CARRA 2016 Scientific Meeting Abstracts Have Been Published
The “Proceedings of the 2016 Childhood Arthritis and Rheumatology Research Alliance (CARRA) Scientific Meeting” has been published. Congratulations to all the authors!  The full content of the supplement can be found at http://ped-rheum.biomedcentral.com/articles/supplements/volume-14-supplement-1.

CARRA at the Arthritis Foundation’s JA Conference in Phoenix
Kelly Mieszkalski, MAAt the JA Conference in Phoenix, organized by the Arthritis Foundation, July 14-17, CARRA had an increased presence!  While CARRA members have presented at JA conferences for years, this represents the first time CARRA was an official participant, hosting a table with staff and members available to talk with attendees and information on CARRA publications and the CARRA Registry. “It was an amazing experience!” said CARRA’s Executive Director, Kelly Mieszkalski. “Over 1100 parents and kids were at the conference, and they were all so eager to hear about CARRA. They absolutely loved Emily von Scheven’s talk about research and couldn’t wait to come hear about CARRA and the Registry.
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CARRA | Carol Wallace: Visionary, Innovator, Collaborator, and ClinicianCarol Wallace Redefines "Major Contributor"
Visionary, outstanding clinician, mentor, partner, and researcher, Carol Wallace retires from the University of Washington, but she’s not leaving pediatric rheumatology or CARRA!
Read More...

Did You Miss Carol Wallace's Presentation?
If you missed Carol Wallace's presentation, Developing Standardized Treatment Protocols, during the 2016 CARRA Annual Meeting, the slides and audio are posted on the CARRA website. Click on April 15th to access these materials.

Registry Update
Registry Enrollment: 1,868
STOP-JIA Enrollment: 77

Registry Stats
Enrollment: 1,868
10 sites have enrolled 1-5 patients
30 sites have enrolled 6-49 patients
12 sites have enrolled 50 or more patients

Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children's Hospital: 217
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 160
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 156

STOP-JIA Stats:
Enrollment: 77
8 sites have enrolled 1 patient
11 sites have enrolled 2-4 patients
5 sites have enrolled 5 or more patients

Top Enrolling STOP-JIA Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children's Hospital: 16
PI Richard Vehe/SC Sara Kramer, University of Minnesota: 15
PI Kevin Baszis/SC Dawn Helfrichn, Saint Louis Children's Hospital: 14

Announcements

Attending ACR? Then, Save the Date!
If you will be attending ACR, then save the evening of Monday November 14 for a CARRA membership meeting, as well as a STOP-JIA and FROST investigators'/coordinators' meeting! The meeting will be held at the Marriott Marquis starting at 6:30 PM. Registration and more details coming soon.

Study To Identify Factors Most Important To Patients With JIA, And Their Parents/Guardians In Deciding When To Stop Medications
“Stopping medicines for juvenile idiopathic arthritis: perspectives of patients and families” is a study sponsored by CARRA, with additional support from PARTNERS, and is being conducted to identify the factors most important to patients with JIA (ages ≥13, any category) and their parents/guardians in deciding when to stop medications. The ultimate goal is to integrate these factors into clinical decision-making and future research investigating the management of inactive JIA. This study is conducting interviews by telephone. To be eligible for an interview, an online survey with additional details about the study must be first completed. Participants who are interviewed will receive a $30 gift card for their time. Read more about this opportunity and access materials. Questions? Contact Dan Horton at [email protected].

Pediatric Scleroderma Family Day
The Pediatric Scleroderma Family Day conference (Kids Get Scleroderma Too), takes place on Saturday, October 29 at Hackensack University Medical Center! This free program is sponsored by the Tri-state Scleroderma Foundation, and is intended to educate families, and provide an opportunity for them to network with each other. There will be separate breakout sessions for parents, teens, and younger children. More information on the program is here!

Arthritis Foundation News

JA Camps don’t stop in July!
There are camp opportunities in September, October, and November! The Arthritis Foundation’s JA camps give kids with arthritis and related conditions the chance to make lasting memories. For many campers, it’s the first time they’ve met other kids who live with the same challenges and limitations. View our comprehensive list of 2016 JA camps, locations, dates and more.

Arthritis Foundation’s Jingle Bell Run
The Arthritis Foundation’s long-running Jingle Bell Run is a festive race that helps champion arthritis research and brings people from all walks of life together, to say Yes to furthering a great cause. Taking place in cities across the country during the end-of-year holiday season, this annual event is a fun way to get out, get moving and raise funds and awareness. To find your local JBR event please visit www.jbr.org.

Arthritis Foundation iPeer2Peer Mentorship Program
The Arthritis Foundation is piloting a new peer mentorship program called iPeer2Peer. The goal of this program is to help and support teens with Juvenile Arthritis (JA) and related childhood rheumatic diseases. The iPeer2Peer Program was developed by the iOUCH (improving Outcomes in Child Health through Technology) research team at the Hospital for Sick Children in Ontario, Canada to help teens with chronic disease better manage their condition.

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