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CARRA Newsletter-December 2017 Issue 1

Congratulations CARRA-AF Grant Awardees!

CARRA and the Arthritis Foundation are excited to announce the awardees from the CARRA October large and small grant cycle. Congratulations to the CARRA member PIs listed, and thank you to Alpha Omicron Pi Foundation (AOII) for funding the three grants noted below.

In this Issue...

 

Large Grants

Kiana Johnson, East Tennessee State University: Healthcare Transition Readiness and Health Self-management among youth with Juvenile Systemic Lupus (funded by AOII)

Kathleen O'Neil, Indiana University School of Medicine: The Relationship Between Changes in Adipokine Levels and Disease Activity in Pubertal Children with SLE

Small Grants

Fatima Barbar-Smiley, Nationwide Children's Hospital: Immunogenicity of pneumococcal vaccination and impact on nasopharyngeal pneumococcus colonization in patients with childhood onset systemic lupus erythematosus

Y. Ingrid Goh, The Hospital for Sick Children: Patient and Caregiver Engagement in Research (PACER): Approaching for research on date of rheumatic diagnosis—a pilot project (funded by AOII)

Joyce Hui-Yuen, Cohen Children's Medical Center: Feasibility of Conducting Epigenetic Analysis in Pediatric Lupus B Cells

Suzanne Li, Hackensack University Medical Center: Tracking Disease Activity in Juvenile Localized Scleroderma with a Mobile App (funded by AOII)

Melissa Oliver, Indiana University, Riley Hospital for Children: Clinical disease manifestations associated with anti-TNF non-response in Juvenile Spondyloarthropathy

Victoria Werth, The University of Pennsylvania: Evaluation of the reliability and validity of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) in pediatrics

Leandra Woolnough, Texas Scottish Rite Hospital for Children: Longitudinal Musculoskeletal Ultrasound Assessment in Juvenile Idiopathic Arthritis

Upcoming Grant Deadline

The next CARRA-AF grant application deadline is March 1, 2019. For more information about the CARRA-AF grant program, please visit the CARRA website at http://carragroup.org/members/grants-and-funding.


Utrecht Summer School 2017

CARRA

Eve Smith (PReS), Maya Breitman, Theresa Wampler-Muskardin

With sponsorship from CARRA and the Arthritis Foundation, Maya Breitman and Theresa Wampler-Muskardin attended the Utrecht University Summer School course “Why Translational Medicine Fails-And What to do About it” this past July in the Netherlands. This course was created and is directed by the EUREKA Institute of Translational Medicine (http://eurekainstitute.org).  EUREKA is a not-for-profit organization established in 2008 by leaders in the field of translational medicine (including pediatric rheumatologist Berent Prakken).

“The birth of Eureka arises from the realization that the itinerary from molecular to clinical medicine requires a seamless trajectory to insure that talent, ideas, and potential cures are captured. An important resource and one that is a fundamental unmet need is human capital: a person who is a builder of bridges, who has the knowledge, the skill and the desire to navigate the challenges and components of this complex field. System-wide networks which can inspire, catalyze and sustain Translational Medicine on an international scale simply do not exist. These unmet needs are perceived as the main hurdle to the integration between Molecular and Clinical Medicine into a seamless gradient leading to a patient-centered approach to healing (Precision Medicine).”  (http://eurekainstitute.org/about-us/)

Read the Full Article


Request for Applications
RFA for Lead Author of CARRA Registry Manuscripts

Application Deadline: January 12, 2018

CARRA is seeking investigators to serve as lead authors of manuscripts using CARRA Registry data. Two manuscripts are currently planned: one to characterize children with psoriatic arthritis and enthesitis related arthritis and one to characterize etanercept use in the treatment of JIA. The manuscript projects will be joint collaborations between CARRA and the pharmaceutical company sponsor. This is an excellent opportunity to acquire practical experience with analyzing Registry data and receive project-based mentoring. Statistical support will be provided. We anticipate additional similar opportunities in the future. See the RFA for full details.


Request for Applications
CARRA-AF Research Coordinator Pilot Support Program

Application Deadline: January 18, 2018

CARRA and the Arthritis Foundation are committed to supporting our CARRA Registry sites and believe firmly in the importance of a dedicated  coordinator to support enrollment and ongoing maintenance of the CARRA Registry and sub studies. As such, we are pleased to announce a pilot program that will provide funding to a limited number of current CARRA Registry sites for salary support for a CARRA Registry research coordinator.

See the RFA for full details


Renew Now
2018 Membership Online Renewal Form is now Live!

Renewal Due Date: February 1, 2018

Renew your CARRA membership by reviewing/updating your membership record and by paying any applicable dues by February 1, 2018 to avoid late fees. You can renew your membership through a link in an email that you should have received. Please contact Nicole Dahms ([email protected] if you did not receive this notification. See the CARRA 2018 Membership Categories and Dues for full details.


Important Annual Meeting Announcements

CARRA Abstracts

Abstract Deadline: January 22, 2018

Abstract submission is now open for the 2018 Annual Scientific Meeting. Abstracts will be peer-reviewed and selected for either oral or poster presentation.

All recipients of CARRA-AF grants (small grants, large grants, and publications support grants) are required to submit an abstract and present a poster at the 2018 detailing results and/or current status of their project.

All abstracts will be published in an online supplement to Pediatric Rheumatology, which will be available in May of 2018. In order to facilitate the publication process, we require all abstracts to follow the publisher's abstract guidelines. The abstract guidelines and sample abstract are provided here:

    


2018 Pediatric Residents Program

Application Deadline: January 26, 2018

To address the shortage of pediatric rheumatologists and to expose pediatric residents to the field of rheumatology, CARRA has created the Pediatric Residents Program. The goals of the CARRA Pediatric Residents Program are to:

  • Provide pediatric residents with access to the broad pediatric rheumatology community through participation in CARRA's Annual Scientific Meeting.
  • Encourage interested pediatric residents to consider rheumatology as a subspecialty, thus improve patient access to pediatric rheumatologists.

To help achieve these goals, CARRA is providing funds to support pediatric residents’ attendance at the Annual CARRA Scientific Meeting at the Hyatt Regency Denver in Denver, CO from April 12-15, 2018. Awardees will be teamed with a CARRA member from another state/institution who will help guide their experience at the meeting.

Click here for complete program details.


Registry Update

For STOP-JIA sites:

Many patients are starting to complete the study. The last study visit at 12 month visit is critical (primary endpoint). Please look ahead and plan to capture this visit on all your active STOP-JIA patients.

Congratulations to...

  • The Registry team at Children’s Hospital of Pittsburgh of UPMC for enrolling their 2nd FROST patient!
  • The Registry team at Duke Children’s Hospital and Health Center for completing the “quadfecta”: enrolling the same patient into CARRA Registry, STOP-JIA, PEPR, and PEPR Pedometry.
  • the Registry team at University of Florida-Shand's Children's Hospital for enrolling their site's first 2 STOP-JIA patients.
  • The Registry team at Hackesack University Medical Center for enrolling their site's 2nd FROST patient.

Enrollment Update (as of 12/15/17)


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.

Champion of Yes
The Arthritis Foundation is the Champion of Yes. We exist to conquer arthritis and other childhood rheumatic diseases. We’ve been meeting the unique and urgent needs of families for nearly 70 years. Working closely with such great research partners as the Childhood Arthritis and Rheumatology Research Alliance (CARRA) (www.carragroup.org), we’re investing millions of dollars in outreach and collaborative research that advances prevention, care and a cure for kids and teens with rheumatic diseases. Our tools and resources help more children say Yes to making life better.