CARRA Newsletter-October 2017 Issue 1


Register Now for CARRA Activities at the 2017 ACR Conference!

On November 3-8, the 2017 ACR Meeting takes place in San Diego, CA at the San Diego Convention Center. Below are some CARRA related meetings in San Diego. Unless otherwise noted, all CARRA activities will take place at the Hard Rock Hotel San Diego, 207 Fifth Ave. San Diego, CA 92101.

You must pre-register to attend the meetings and events below. The registration deadline is October 30.                                  

CARRA Meeting
6:30-7:30 PM
Hard Rock Hotel San Diego
Meeting Room: Legends 3-6

CARRA-AF Reception
7:30 – 10:30 PM
Hard Rock Hotel San Diego
Meeting Room: Legends 3-6

Additional Group and Committee Meetings for CARRA Members only

Sunday, November 5

CARRA Early Investigator Networking Reception
Who may attend: CARRA Early Investigators and Fellows
7:00 – 9:00 PM
Don Chido Mexican Restaurant

Monday, November 6

CARRA Research Coordinator Advisory Committee Breakfast Meeting
Who may attend: CARRA RCAC Members and other CARRA Research Coordinators in attendance at ACR.
7:00 - 8:30 AM
Hard Rock Hotel San Diego
Meeting Room: Satisfaction

PFAPA Meeting
(Invitation Only)
8:00 – 9:30 AM
Hard Rock Hotel San Diego
Meeting Room: Encore 2

CARRA CRMO/CNO Workgroup Lunch Meeting
(Invitation Only)
12:30 – 2:30 PM
Hard Rock Hotel San Diego
Meeting Room: Encore 2

SCORE Study Start-up
(Invitation only--for confirmed SCORE study sites)
4:30 – 6:00 PM  (Note the CARRA meeting at 6:30 PM in the same hotel)
Hard Rock Hotel San Diego
Meeting Room: Encore 2

Call for New Project and Workgroup Posters for the CARRA-AF Reception

If you have research project or study that you are interested in promoting, a new workgroup you would like to organize, or a project for which you would like to recruit volunteers or additional committee members, we invite you to display a poster with information about your project during the reception and be available to discuss with reception attendees.

Posters will be reviewed and you may be asked to acknowledge funding sources and supporters as appropriate.  CARRA will handle the logistics and costs related to printing and shipping the poster to San Diego.  Posters must be 42” x 42”. Please use the template available here and modify as appropriate for your project.

The deadline to submit your project poster is Wednesday, October 25. Submit your poster by emailing it to Nicole Dahms ([email protected]). She is also available for any questions you have about the CARRA-AF reception.

What Caught My Eye: Trauma and SLE: Continuing the Discussion on a link between Adverse Experiences and Autoimmune Disease

Tamar Rubinstein, MD
Children's Hospital at Montefiore

Back in July, Jim Jarvis wrote in “What Caught Our Eye” about an association between Adverse Childhood Experiences (ACEs) and autoimmune disease. He pointed out that over the past decade, evidence has amassed linking ACEs (which include trauma, neglect, parental incarceration, food insecurity, and racial discrimination) to poor health and the development of chronic disease. This association is observed across cultures and people that have differed by geography, ethnicity, and even era of time. Many studies have noted a dose response, where more cumulative experiences lead to increasing risk of disease. And as Jim pointed out a few months ago, autoimmune diseases appear to follow the same pattern.

Jim wrote a moving call to arms to the community, pointing out the knowledge gaps that exist. Among the central questions around a link between trauma/ chronic stress and autoimmune disease is the question of whether this a causal relationship. A paper recently accepted to Arthritis & Rheumatology, "Association of trauma and posttraumatic stress disorder with incident systemic lupus erythematosus (SLE) in a longitudinal cohort of women," brings us closer to an answer.

If you would like to contribute an article (related to pediatric rheumatology research) to our newsletter, we would love to hear from you! Please email [email protected] with details.

Registry Update

We have now enrolled over 4,000 patients!!

Enrollment Update (as of 10/06/17)

Meet the New CARRA Staff

Brian Mondragón Jones, CAE
Director of Administration
[email protected]

Brian graduated from the University of Wisconsin-Green Bay in 2004 with a degree in Psychology. For more than 10 years prior to transitioning to CARRA, he served the Agricultural & Applied Economics Association (AAEA) in various roles, including time as Director of Administration and as Executive Director.  He earned his Certified Association Executive (CAE) credential in 2011. His area of specialty is process development and streamlining.

Brian is available to help with questions about CARRA grants, invoices, website content, members-only collaboration site content, surveys, elections, workgroup projects, and other general inquiries.

Nicole Dahms, CMP
Meetings & Membership Manager
[email protected]

Nicole graduated in 2005 from the University of Wisconsin-Whitewater with a degree in Sociology. Currently, she is enrolled at Carroll University in pursuit of a MBA. Prior to working for CARRA, she served as the Meetings Manager for the Society for Reproductive Investigation (SRI) and Sales and Operations Coordinator for the Association of Equipment Manufacturers (AEM). Nicole earned her Certified Meeting Professional (CMP) credential in 2016.

Nicole is available to help with questions related to the CARRA Annual Scientific Meeting, ACR Meeting, scheduling a conference call, Membership, updating contact information, help logging in to the website, and general inquiries.

Do You Have Good News to Share?
If you are a CARRA member and have a professional achievement (new grant awarded, a CARRA publication) you would like to share with our readership, please email the details to [email protected] with the subject “CARRA Newsletter Announcement for Consideration.”

Arthritis Foundation Updates


JA Power Pack Survey: Please Provide Your Feedback!

Thank you for helping the Arthritis Foundation promote our JA Power Pack program to newly diagnosed families. We hope you and your patients have found the resources helpful. In order to continue to develop the JA Power Pack for families who have a child newly diagnosed with a childhood rheumatic disease, we would like your feedback on the JA Power Pack program.

Please complete this brief survey about your experience with our JA Power Pack program by October 20, 2017.

Take the survey

Your responses will help us provide the best resources for our JA community. If you have any questions, please contact Laura Marrow, Director, Partnerships Liaison at [email protected].

Nora Singer AF Funded Research project, “Cell-based therapy in systemic onset JIA (sJIA) refractory to conventional “c” and biological “b” DMARDs"

Patient perspectives matter greatly when it comes to decisions being made about health care. Their voices are vital in the clinical research process as new medications are being developed and tested.  Patient perspectives play a large role in Dr. Nora Singer’s 3-year Arthritis Foundation-funded project – “Cell-based therapy in systemic onset JIA (sJIA) refractory to conventional “c” and biological “b” DMARDs”. Her project uses stem cells derived from adult cells that are designed to “reset” the immune system. Read more here.