Newsletter November 1, 2016  

RSVP & Register for the CARRA Meetings During ACR!
 

CARRA will be holding meetings during the upcoming ACR conference in Washington, DC on Monday 11/14 and Tuesday 11/15.
Registration is free!

For a full meeting schedule and to RSVP, click here.

What Caught My Eye

By Kenneth N. Schikler, MD
Chief, Divisions of Pediatric Rheumatology & Adolescent Medicine
University of Louisville School of Medicine
Kosair Children's Hospital

Kenneth N. Schikler, MD It is not unusual for pediatric rheumatologists to be asked to see a child with persistent fever, without arthritis, who may or may not have had rash. Usually by the time the rheumatologist is called, the child has often been treated with antibiotics, and bacterial cultures have been done and were negative, and serologic or PCR studies for tick related illnesses and other infectious etiologies are in process or negative. Viral studies are done, and how specific/ disease related is the finding of a positive recovery of a respiratory pathogen from a nasal swab? Read more...

CARRA Members-Only Collaboration Site Launched

CARRA is pleased to announce that our Members-Only Collaboration Site is now up and running!
The Members-Only Collaboration Site includes resources, such as:

  1. CARRA Registry Documentation
  2. Diseases & Research Committee Spaces
  3. Data Request Portal

To access the members-only site, please note that your login information is not the same as any previous carragroup.org or carranetwork.org login you might have used in the past. Please visit this page for instructions on how to access the site.

CARRA Data Request Portal Now Open!

You can now initiate a request for data through the Data Request Portal for the following datasets:

  • CARRA Legacy Registry
  • CARRA 2 Registry
  • Other CARRA-related databases (CTP pilots, APPLE)

Access the web-based submission portal for data requests via the CARRA Members-Only Collaboration site here: https://wiki.carragroup.org. Important deadlines and support information can be found on this page.

Publications Policy Reminders

If you are submitting/presenting an abstract, manuscript, poster, or presentation based on CARRA data, please remember to submit to the Publications Committee for review prior to your submission or presentation. Any manuscript, publication, proceeding, abstract, or presentation resulting from a project supported or advanced by contributions from CARRA infrastructure or the CARRA membership also needs review by the Publications Committee. Read more...

Presenting a Poster with CARRA Registry Data?
Please make sure to use the appropriate CARRA Registry Poster template. The current templates and full Publications Policy can be found on the CARRA website here.

CARRA Registry Updates

CARRA Registry
The CARRA Registry is enrolling children with new onset JIA in addition to children that have started a new arthritis medication. Currently we have:

  • 60 sites approved to enroll
  • 2121 subjects enrolled

STOP-JIA (Start Time Optimization of biologics in Poly-JIA)

  • 51 site are approved to enroll
  • 107 subjects enrolled

FROST (FiRst Line Options in Systemic JIA Treatment)

  • 19 sites are approved to enroll
  • 0 subjects enrolled
Announcements

CARRA's Small Center Group Needs YOU!
If you are going to be at ACR please register for the Small Center Meeting on Tuesday 11/15 from 11:30AM-12:45PM at the Marriott Marquis hotel! Also, help us update our Small Center list! Are you at a CARRA site with 3 or fewer pediatric rheumatologists (including full and part-time)?  If yes, please provide your contact information here. Read More...

RAAC to Host Joint Exam Live-Streamed Webinar 12/7

This is the first in a series of educational webinars being organized by the CARRA Research Associate Advisory Committee (RAAC). Children’s Hospital of Pittsburgh fellows Laura Tasan, MD and Paul Tsoukas, MD will demonstrate how to perform a joint exam. This webinar is primarily for research coordinators, but anyone is welcome to attend. More details will be provided in the next newsletter and posted on the CARRA website. Contact Kimberly Francis at [email protected] with questions.

Cure JM Announcement: Free CME Activity
Cure JM Foundation and Dell Children’s Medical Center are offering a free CME activity: 2017 Update on Juvenile Myositis Care and Research on Friday, February 17, 2017 from 7:15am-4:30pm at Dell Children’s Medical Center in Austin, TX. This Medical Conference is open to all physicians and members of the medical community with a special focus on those in pediatrics, rheumatology, dermatology, and neurology. Read More...

 

Annual Jingle Bell Run
The Arthritis Foundation’s long-running Jingle Bell Run (JBR) 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.

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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