Newsletter October 31, 2016  


  1. Register for the CARRA Meetings during ACR
  2. What Caught My Eye
  3. CARRA Members-Only Website is Up and Running
  4. The CARRA Data Request Portal is Now Open
  5. Publication Policy Reminders
  6. CARRA Registry Updates


  1. The CARRA Small Center Group Needs YOU!
  2. RAAC to Host Joint Exam Live-Streamed Webinar 12/7
  3. Cure JM Announcement: Free CME Activity

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. See schedule below. For more information and to register click here.

CARRA Registry, STOP-JIA, FROST Meeting for Investigators and Coordinators
This important meeting is for CARRA Registry site investigators, coordinators, and fellows. CARRA members from non-Registry sites are also encouraged to attend. Pre-registration is required.
When: Monday, 11/14/16; 6:30-7:30 PM

CARRA Meeting and Poster Reception
This meeting is open to all CARRA members in addition to colleagues and supporters outside of CARRA. Pre-registration is required.
When: Monday, 11/14/16; 7:45-9:30 PM
Where: Marriott Marquis, Salon 5 (Meeting Level 2- M2)
Cash bar and heavy hors d'oeuvres
*one drink ticket provided per registered attendee


CARRA RAAC Meeting for Study Coordinators (lunch provided)
This meeting is open to all CARRA Research Associate Advisory Committee (RAAC) members in addition to other coordinators who work on CARRA research studies who are attending the ACR conference. Pre-registration is required.
When: Monday 11/14/16; 11:00 AM-1:00 PM

CARRA Small Centers Meeting (lunch provided)
This meeting is for investigators, coordinators and fellows from small sites (those with 3 or fewer pediatric rheumatologists). Pre-registration is required.
When: Tuesday 11/15/16; 11:30-12:45 PM

CARRA Early Investigator Meeting (also open to fellows, lunch provided)
This meeting is for CARRA members who are Early Career Investigators (within 7 years post-fellowship) and fellows. Pre-registration is required.
When: Tuesday 11/15/16; 11:45-12:45 PM

Registration is free. You must register by November 7 to attend.

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?

In JAMA 2016   316 (8) 835, Herberg et al have published “Diagnostic Accuracy of a 2-Transcript Host RNA Signature for Discriminating Bacterial vs Viral Infection in Febrile Children”. Their findings in a study that looked at the RNA expression signatures in febrile children who had:

  1. Bacterial syndromes with recovered/identified bacterial pathogens,
  2. Bacterial syndromes with no bacterial recovery,
  3. No classic syndrome nor recovery of infectious agent,
  4. Biral syndrome with virus identified,
  5. Biral syndrome without virus identified, and
  6. Henoch Schonlein Purpura or JIA.

The JIA patients were sampled at time of diagnosis or “early in disease”, but subtypes of JIA were not identified and median C-RP was 0.1. They also included in their analysis findings of the work of others in children with SLE.

Of interest to me, in their preliminary data they found two transcripts, IF144L and FAM89A showed reciprocal expression in viral and bacterial infection. In response to viral infection, mediated by type 1 interferon, IF144L was upregulated, while in children with septic shock FAM89A was upregulated.

In Arthritis and Rheumatology 2009, Barnes and colleagues reported on gene expression profiles in new onset JIA and in systemic JIA in addition to IL-6 and TLR/IL-1R pathways being activated, the Peroxisome Proliferative activated Receptor (PPAR) was identified.

FAM89A is reported to be one of the targets of PPAR gamma in an animal model reported by Tero-Pekka Alastalo et al in Journal of Clinical Investigation2011 Sep;121(9):3735-46. It would have been wonderful if the investigation could have included children with systemic JIA in active stages, to see if FAM89A expression discriminates septic children from innately toxic non-infected children. Still, the potential for being able to  eliminate a  viral etiology to rash and persistent fever would certainly be helpful.

The CARRA Members-Only Collaboration Site Has 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 or login you might have used in the past. If you have received a user ID and accessed before, then you do not need to reset your password. If you have not yet accessed, please follow the instructions below to get your password, or refer to this guide (PDF).

  1. Visit now and request a new password.
    1. Select “Can’t access your account” then “I have forgotten my password"
    2. Use your e-mail address as your username
    3. You will receive an email with a link to reset your password
  2. When you have set your new password, wait 4-5 minutes to be sure your login information is synchronized to all new sites.
  3. Log in to and have a look around!

Please note that restricted CARRA Registry information that was hosted at can now be found here:

Lastly, a link to the Members-Only Collaboration Site has been added to the website under the Members menu.

If you need any assistance, please email [email protected].

Once logged in, watch this 12 minute video for help on getting started

The CARRA Data Request Portal is 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:*

The deadline for submitting data requests is December 15, 2016, at which time all received submissions will be sent for review. Depending on request volume, reviews will be completed as soon as possible but no later than mid-January 2017.

The deadline for PRSYM abstract submissions is January 11, 2017. If you are requesting data for a PRSYM abstract, submit your request as soon as possible and send an email to [email protected]. The CARRA Review Team will do all that it can to fulfill your request promptly if it is for the PRSYM deadline.

Submission and review cycles will open and close on a quarterly basis. Subsequent request deadlines are:

  1. March 15, 2017
  2. June 15, 2017
  3. September 15, 2017
  4. December 15, 2017

If you need assistance with the submission of a request, contact Chris Gentle [email protected].

If you have a specific question about data, please contact me by email [email protected].

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.

All submissions to the CARRA Publications Committee should be submitted to the Committee Chair ([email protected]), who will distribute the request as needed.
Review timelines are as follows, listing type of publication and the time needed for review by the publications committee:

  • Abstracts - 7 Days
  • Papers/Manuscripts - 3 Weeks
  • Posters - 7 Days
  • Slides - 7 Days
  • Meetings/Proceedings - 7 Days
  • Press Releases - 7 Days

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

The CARRA Small Center Group Needs YOU!
The CARRA Small Center Chair and Vice Chair, Peter Blier and Theresa Wampler-Muskardin, are excited about starting regular communications with the CARRA small center community. CARRA has recently expanded the definition of a “small center” to include sites with 3 (formerly 2) or fewer pediatric rheumatologists. This includes full OR part time pediatric rheumatologists.  

  1. 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!
  2. 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.


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

2017 Update on Juvenile Myositis Care and Research

Invitation from
Lisa Rider, MD
Cure JM Medical Advisory Board, Chair
Deputy Chief, EAG, NIEHS, NIH, Bethesda, MD
Ruy Carrasco, MD                                    
Cure JM Medical Conference, Medical Director
Chief, Division of Rheumatology, Dell Children’s Medical Center, Austin, TX

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.
Learning Objectives

  1. Identify best practices in diagnosing and treating patients with Juvenile Myositis (JM).
  2. Identify how metabolomics, proteomics, and genomics can lead to better individualized care.
  3. Identify how to improve patient satisfaction, gain patient loyalty, and smooth transition to adult care.
  4. Discuss selected JM case studies and make consensus treatment plans to optimize care.

Accreditation Statement
This activity has been planned and implemented in accordance with the Essential Areas and Policies of the Texas Medical Association (TMA) through the joint providership of Seton Healthcare Family and Cure JM Foundation.

The Seton Healthcare Family is accredited by the Texas Medical Association to provide continuing medical education for physicians.

The Seton Healthcare Family designates this live activity for a maximum of 6 AMA PRA Category 1 Credit(s).™ Physicians should claim only the credit commensurate with the extent of their participation in the activity.

For more information on this free CME activity, please visit:
Pre-Registration is required.

Questions? Please contact Cure JM’s Executive Director, James Minow ([email protected]) or Cure JM President, Mitali Dave ([email protected]).
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