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CARRA Newsletter-September 2018 Issue 1

CARRA Activities at ACR – SAVE THE DATE!!

CARRA will be in Chicago during the 2018 ACR/ARHP Annual Meeting. Join us at the Hyatt Regency McCormick Place on Monday, October 22 for a membership meeting followed by a reception co-hosted with the Arthritis Foundation. The activities noted below are open to all ACR conference attendees.

CARRA Meeting
Monday, October 22
6:30-7:30 pm
Hyatt Regency McCormick Place
Grant Park Room

CARRA-Arthritis Foundation Reception
Monday, October 22
7:30-10:00 pm
Hyatt Regency McCormick Place
Prairie Room

Registration will be available soon. We hope to see you there!!

In this Issue...

CARRA at ACR 2018

Utrecht Travel Award Recipients

Publications Review Process

Apply Now for Small Grants!

Fellows Opportunity

Registry Update

Upcoming Deadlines

Arthritis Foundation Updates

         

Recaps from the 2018 Utrecht Travel Awardees

CARRA’s Utrecht Summer School Sponsorship Program is an exciting opportunity for CARRA early investigators and fellows with established translational research interests to travel to the Netherlands to participate in the Utrecht summer school course on translational research. Sponsorship includes funding for travel and course tuition, which is made possible through the generous financial support of the Arthritis Foundation. This year’s awardees were CARRA Fellows Jessica Neely from the University of California, San Francisco, and Margaret Chang from Boston Children’s Hospital. Read about their experiences at the course this past summer below!


Jessica Neely
University of California, San Francisco

I am very grateful to CARRA and to the Arthritis Foundation for sponsoring me to attend the Utrecht Summer School course, “Translational Medicine: Doing the Right Research Right.”  This course highlights the fundamental flaws in the research “game” in which researchers, plagued by publication pressures and performance metrics, are producing sloppy science that doesn’t effect change for patients.  As one speaker put it, “publications don’t cure patients.”   Throughout the week, we participated in various exercises that, I must admit, pushed my comfort zone.  We were challenged to reflect on who we are and why we do what we do and how to draw on these characteristics in our research endeavors.  We honed leadership skills and learned how each of our own personality types works best within a team.  My favorite activity of the week was taught by two artists and included a workshop on creativity.  We learned that everyone has creativity, that it is a skill that can be turned on and off and can be nurtured for the scientific process.  These are invaluable skills that don’t get enough attention in medical training!

In addition to discussing the challenges and flaws of translational medicine, we began to discuss solutions to conducting translational medicine right.  We were challenged to think about how science works from an initial idea to a clinical trial as well as various steps along a disease process where you might be able to intervene.  Practical issues, such as when to think about intellectual property and patents, were discussed and debated among the faculty and students.  There was an emphasis on patient engagement in research and patient representatives were present to teach us how we can involve patients in every step of research.  All of this was in addition to the “hidden curriculum” of connecting with international like-minded researchers and future collaborators.

This week was a truly inspirational experience for me.  I have come away feeling motivated, more confident, and hopeful that we can begin to make changes in how research is done.  The physician scientist pathway is daunting at times, but the faculty at this course inspired me that it can be fun and rewarding and if done right, can be transformative for our patients.  I am thankful to the incredible faculty who volunteered their time to be at the summer school and for all the wonderful new friends and colleagues I made during this week.


Margaret Chang
Boston Children’s Hospital

I am a third-year pediatric rheumatology fellow and physician scientist.  I registered for the Utrecht “Translational Medicine: Doing the Right Research Right” course because I wanted to learn how to be a more effective translational researcher.  Every year that I attend CARRA meetings, I am struck and inspired by how many questions that are still unsolved in pediatric rheumatic diseases and the many obstacles to studying these diseases in a clinically meaningful way.

One important realization that I came to during the course was that CARRA is “doing the right research right”.

I was proud that CARRA has already embraced the core principle of collaboration.  The course not only emphasized the importance of collaborating with other researchers and physician colleagues but also the importance of involving patients and families, not just as research subjects but also as collaborators in identifying the important questions to answer and directions of research.  We also discussed the need to collaborate with industry to utilize their resources and expertise in translating research findings into therapeutics for patients.  These are all principles that CARRA has not only embraced but has put into practice. 

This course dove into the different aspects of designing and conducting translational research and also gave us tools to achieve these goals in a wholly unexpected way.  Through both a “hidden” curriculum (networking and socials) and not-so-hidden curriculum, we cultivated the skills required to collaborate with each other.  We learned about team structure, conflict resolution, thinking creatively, building relationships, mentorship, and leadership.  Through small group activities and projects, rather than course lectures, we practiced these skills daily.  The most valuable aspect of this course, however, was the like-minded people whom we met and the lasting relationships that we built. 

I really enjoyed this course and highly recommend it to fellows and post docs who are interested in building collaborative translational research.  There is also a similar program through the Eureka Institute for more established researchers.  Thank you to CARRA and to the Arthritis Foundation for providing me with this opportunity.


CARRA Announcements

REMINDER: Publications Review Requirement (IMPORTANT)

All CARRA-related publications and presentations are subject to the CARRA Publication and Presentation Guidelines.  These include publications or presentations that derive from or utilize:

  • CARRA infrastructure such as mailing lists, conference calls, annual meeting space, or funding
  • Data and/or bio specimens from CARRA studies such as the CARRA Registry, Registry substudies, APPLE, TREAT, or RAPPORT, or from studies funded by funded by CARRA-Arthritis Foundation grants
  • Other projects funded by CARRA-Arthritis Foundation grants
  • Data from surveys of CARRA members

Papers/manuscripts, abstracts, meeting proceedings, posters, press releases, and slides that are CARRA-related (as defined above) must be submitted for review by the Publications Committee prior to submission to journals or conferences (or before you make a presentation).  In order to expedite the review process, you must submit your materials for review via this online Publication Review Submission Form.

As you plan your publication or presentation, keep in mind the time needed for review by the CARRA Publications Committee and submit to the committee well in advance of your publication submission deadline:

Time Needed for CARRA Publications Committee Review

Paper/Manuscript:          3 Weeks
Abstracts:                       7 Days
Meeting Proceedings:    7 Days
Poster:                            7 Days
Press Release:                7 Days
Slides:                            7 Days

If you have any questions about the publication review process, please contact CARRA Director of Administration, Brian Mondragón Jones ([email protected]).


Now Accepting Applications
CARRA-Arthritis Foundation Small and Large Grants
Applications due October 1, 2018

The October 1, 2018 deadline for the CARRA-Arthritis Foundation Small and Large Grant funding opportunities is quickly approaching! Click on the "Submit a Small Grant" or "Submit a Large Grant" buttons below to submit your application.

For the Small Grant, eligible investigators can apply for up to $25,000 in total project costs. The research project can be a pilot, continuation of ongoing research, or other projects that move forward clinical or translational research that furthers the CARRA mission. Preference will be given to research that is collaborative in nature, which leverage current CARRA network resources and/or will further develop the CARRA network. New or early investigators are encouraged to apply and will be afforded special consideration. Please click here for the CARRA-Arthritis Foundation Small Grant Application requirements.

For the Large Grant, letters of intent (LOIs) were due on September 1. Eligible investigators who submitted their LOIs by September 1 can apply for up to $50,000 in total project costs. This funding opportunity 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. Please click here for the CARRA-Arthritis Foundation Large Grant Application requirements.

If you are planning to submit for the upcoming cycle, please review all information available on the CARRA website prior to starting your application. If you have any questions about eligibility, budget or the submission process, please contact Portlynne Joseph ([email protected]). Remember to use the templates provided when you submit your final application. Applications that do not follow the guidelines will not be considered.

         


ATTENTION NEWLY GRADUATED CARRA FELLOWS: Update your CARRA Membership Now and Transition to Pediatric Rheumatologist Member for Free!

For those Fellow Members who have recently graduated, thank you for being a part of CARRA during your Fellowship. We are pleased to offer you the opportunity to become a voting, Pediatric Rheumatologist member for the remainder of 2018 at no cost. 

Continuing your membership as a Pediatric Rheumatologist member demonstrates your support of the pediatric rheumatology research community and allows you to fully participate in CARRA’s efforts while receiving the benefits of membership. Pediatric Rheumatologist members have full voting rights, are eligible for CARRA grants and travel awards, annual meeting travel reimbursement, and are may run for the various leadership positions.

NEWLY GRADUATED FELLOWS: To take advantage of this opportunity, simply follow the link below to provide your most current contact information. We will update our database with your new member type and updated contact information, and also add you to our CARRA Early Investigator group.

Yes, I’d Like to Transition to a full Pediatric Rheumatologist Member of CARRA

We look forward to continuing to work with you to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases.


CARRA Registry Updates

STOP-JIA Enrollment Goal Exceeded!

STOP-JIA enrollment is now officially closed as of August 31, 2018. Thank you to all the site PIs, investigators, research coordinators and other site research personnel for your hard work! We successfully enrolled 402 subjects into STOP-JIA, exceeding our target enrollment of 400. Great work everyone!

Please continue to focus on follow up data entry: 3, 6, 9, 12 month visits, unscheduled visits, and SAEs and ESIs. Please keep an eye out for STOP subjects who are due or coming due for follow-up data entry. We appreciate your efforts to help finish up this study!

Enrollment Update (as of 9/14/18)


Important Upcoming Dates


Arthritis Foundation Updates

JA Parent Support Network Kicks Off
The Arthritis Foundation is piloting its first JA Parent Support Network in Columbus, OH, on Sept. 22. Led by volunteers, these group activities and meetings are part of an expanding range of personalized help and support resources for parents of children and teens with JA and other rheumatic diseases. Share this exciting news and help bring a JA Parent Support Network to more communities.

2019 Arthritis Foundation Juvenile Arthritis Conference Locations Announced
Save the Dates!! Arthritis Foundation announces 2019 National Juvenile Arthritis Conference locations. July 18 - 21 in Houston, TX and August 1 - 4 in Minneapolis, MN. Save the Date cards will be delivered to clinics the end of 2018.