Newsletter July 15, 2016  

What Caught Our Eye

Are we doing enough sharing with our caring?
By Jay Mehta, MD

As the parent of a 4-year-old, and the resident of a major metropolitan area, the word “share” (and its various constructions) is a daily part of my lexicon. I’m constantly reminding my daughter the importance of “sharing” (which she thinks is giving her friends the toy that she doesn’t want to play with). The other day I took an Uber, and on my last vacation, I stayed in a house I found on Airbnb, both of which are parts of the “sharing economy.” And yesterday, I “shared” with my Twitter followers an interesting article on medical education. Read more…
CARRA News & Announcements

The new Small Centers Vice Chair is Theresa Wampler Muskardin, a pediatric and adult rheumatologist at the Mayo Clinic in Rochester, MN, whose special interests include JIA, spondyloarthropathy, psoriatic arthritis, and innate immunity. Congratulations, Theresa! Many thanks to all who voted in the initial and runoff elections for Small Centers Vice Chair!

Editor’s note: The previous edition of the CARRA newsletter incorrectly identified the authors of the publication The Systemic Juvenile Idiopathic Arthritis Cohort of the Childhood Arthritis and Rheumatology Research Alliance Registry: 2010–2013. The corrected authors listing is as follows: CARRA members Ginger Janow, Laura Schanberg, Betsy Mellins, Yuki Kimura, and Rayfel Schneider, along with Soko Setoguchi and Vic Hasselblad.

Workgroup Update

The TRTC work group, led by Peter Nigrovic, MD, has been working hard on several fronts since the Scientific Meeting. The CARRA Biorepository RFP will be going out to all TRTC members, CARRA Registry PIs, and commercial biobank vendors. The goal is to establish a centralized biorepository that will ship kits, store biosamples, handle biosample shipping requests and overall management of the CARRA biosample inventory associated with the registry. The RFP will be sent out in the next few weeks. If you are a CARRA Registry PI, please consider sharing it with your site's lab director in case they may be interested in responding to the RFP. Read more...

Grants and Funding

The Cure JM Foundation funds research or educational awards in two different cycles in 2016. The vision of Cure JM includes increasing awareness of juvenile myositis and funding research in juvenile myositis that will ultimately lead to a cure. Proposals will be accepted through August 31st, 2016. Each cycle will fund a maximum of three different proposals for up to $50,000 each. Recipients of the 2016 Cure JM Foundation/CARRA Research Grant have been announced. They are:


Hanna Kim, MD

$25,000 over 1 year for her submission entitled "Novel Biomarkers associated with Disease Activity in JDM" in order to expand biomarker analysis to broad proteomic analysis, replacing cytokine analysis from her previous grant.




Claire Deakin, MD
$50,000 over 2 years for her submission entitled "Genetic Risk Factors in Juvenile Dermatomyositis" which will enable inclusion of North American samples to enhance the statistical power of her study.

 

 


James Jarvis, MD
$25,000 over 2 years for his submission entitled "Plasma Exosomes in Juvenile Dermatomyositis."





CARRA Grants

CARRA offers its members several funding opportunities that leverage the CARRA network to further research, positively impact the pediatric rheumatology scientific community, and advance the CARRA mission:
- The Publication Grant funding opportunity (up to $10K) is available to researchers to support efforts required to bring existing data from collaborative research projects to publication.
- Small Grants (up to $25K) are available to support projects in development; new or early investigators are encouraged to apply and will be afforded special consideration.
- The CARRA Large Grant (up to $50K) supports the development and publication of a clinical or translational project which will immediately impact research projects within CARRA or result in a larger collaborative grant that furthers the CARRA mission.

Additional information for the different grant opportunities, including the application instructions and templates, is available on the CARRA website.

Registry Update
Registry Enrollment: 1,502
STOP-JIA Enrollment: 48

Registry Stats
Enrollment: 1,502
11 sites have enrolled 1-5 patients
30 sites have enrolled 6-49 patients
7 sites have enrolled 50 or more patients
SickKids is now a site open to enrollment!


Top Enrolling Registry Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children's Hospital: 182
PI Christi Inman/SC Suzy Jones, University of Utah Hospitals: 150
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 142

STOP-JIA Stats:
Enrollment: 48
7 sites have enrolled 1 patient
7 sites have enrolled 2-4 patients
3 sites have enrolled 5 or more patients
Overall enrollment has slowed considerably. End of August goal is N=90.


Top Enrolling  STOP-JIA Sites:
PI Sarah Ringold/SC Luke Reichley, Seattle Children's Hospital: 9
PI Mara Becker/SC Chelsey Smith, Children’s Mercy Hospital: 5
PI Jennifer Weiss/SC Mary Ellen Riordan, Hackensack UMC: 5

Arthritis Foundation News

The Arthritis Foundation’s annual Juvenile Arthritis Conference is where kids, teens, young adults and their families come together from across the world to get better informed about juvenile arthritis and other childhood rheumatic diseases. JA Conference West is taking place this week, July 14-17, in Phoenix, AZ. Follow updates through the JA Conference Facebook page or connect on Twitter using the hashtag #StrongerThanJA.

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 the comprehensive list of 2016 JA camps, locations, dates and more. http://www.kidsgetarthritistoo.org/pdfs/JA-Camps/JA-Camp-Listing.pdf

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.

Read more…

Connections

NIAMS has scheduled a Thunderclap for Thursday, July 28 at 3 PM. (Thunderclap is a way to broadcast a message from multiple Twitter, Facebook and Tumblr accounts simultaneously.) Their goal is to have 100 subscribers sign up to broadcast the message: “It’s #JuvenileArthritis Month. How do you help a child w/ #arthritis live well? http://thndr.me/svRq2n”. Please consider subscribing and sharing this event to help raise awareness of juvenile arthritis. Learn more and subscribe here: https://www.thunderclap.it/projects/44289-juvenile-arthritis-month.

The NIAMS Juvenile Arthritis Twitter Chat will take place on Monday, July 25 from 2–3 PM. The hashtag for the chat is #JAChatNIH. NIAMS will be partnering with the Arthritis Foundation for the Twitter chat, and invites all to participate.

Save the date! 2nd Global Conference on Myositis, May 5-8, 2017
The conference will take place at the William F. Bolger Center in Potomac, MD. This year's event will feature interdisciplinary scientific presentations of state-of-the-art research in all areas of myositis, with a focus on trainees and young investigators and input from myositis patient support group leaders. The abstract submission deadline is December 16 (http://www.gcom-int.com/abstracts.html).  For the early registration discount, click https://www.regonline.com/builder/site/Default.aspx?EventID=1839144

Scleroderma Foundation National Patient Education Conference
Scleroderma Foundation announces the National Patient Education Conference in New Orleans, July 29-31. Any child, a patient or a sibling of a patient, is welcome to join the program. If the child has received a scholarship in the last three years, he/she is not eligible for another scholarship at this time. There will be programming for children, as well as workshops geared toward adults who have a juvenile patient in their lives. For more information on the conference please call Ryan Burrill at 800-722-HOPE (4673) or email him at [email protected] Visit the conference website at www.scleroderma.org/conference.

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