CARRA Newsletter-June 2018 Issue 2


VERITY Travel Award Recipient Experiences

In collaboration with Brigham and Women’s Hospital and Harvard Medical School, CARRA awarded full travel support for Leandra Woolnough (UT Southwestern) and partial travel support to 3 other individuals (Karen James, University of Utah; Evan Mulvihill, Nationwide Children’s; Rebecca Trachtman, Hospital for Special Surgery) to participate in the VERITY/Brigham Course in Rheumatology Clinical Research which took place May 7-12, 2018 in Boston, MA at Brigham and Women’s Hospital. We are pleased to share experiences from the award recipients.

I would like to express my gratitude to CARRA and the hosts of the VERITY program for this excellent opportunity. The VERITY program provided a diverse, well-organized array of topics to support the junior investigator. Didactic sessions with key topics such as innovative trial designs and comparative effectiveness research took place every morning. Hands-on feedback for the junior investigators’ research was provided in the afternoon sessions, giving in-depth and concrete suggestions on how to improve each individual’s research project. With the sizable representation by pediatric rheumatology attendees, the hosts provided additional support for our unique challenges. I was inspired by the research aspirations of my colleagues and was impressed by the maturation of each project. The VERITY program effectively expanded my knowledge of research methods and strengthened my research project. ~Leandra Woolnough, MD, UT Southwestern Medical Center

In this Issue...

VERITY Travel Award Recipients

Fall 2018 Grant Cycle

Patient-Focused Drug Development Meeting

CARRA Registry Newsletter

CARRA at ACR 2018

Upcoming Dates

Registry Update

Arthritis Foundation Update

Recently, I attended a course geared specifically towards clinical research in rheumatology, offered by VERITY.  VERITY aims to advance clinical rheumatic disease research, through training of clinical researchers, development of new methods for patient oriented clinical research, and supporting a bioinformatics research core.  During this course, I received clinical epidemiology training through didactic sessions, and had the opportunity to sit down one-on-one with world-renowned rheumatology clinical researchers like Drs. Dan Solomon and Brian Feldman.  The course started with a great refresher in some basic principles of clinical epidemiology, and then delved into some more advanced topics.  Brian Feldman’s session on Bayesian statistics was very enlightening as he highlighted alternative statistical approaches. I was also very interested to learn of new methods for identifying patients in large databases using natural language processing, and think this will ultimately be a very useful tool in my future research. Overall, I learned a great deal at this course that will support me in career as a clinical researcher.  VERITY, its mentorship, and bioinformatics resources will continue to be an excellent support for my research.  Thank you CARRA for supporting my research training by making this opportunity possible for me.  ~Karen James, MD, University of Utah

One of the most meaningful aspects of the course for me was the candid discussions that I was able to have with fellow young investigators. From graduating pediatric fellows, I learned key points about how to navigate the job search. From junior faculty members, I learned about challenges and successes associated with applying for NIH funding. This course, and the generous award from CARRA, allowed me to escape the whirlwind of fellowship for a week and really clarify the steps that I need to take in the next part of my career. I am incredibly grateful for that opportunity and for the relationships I was able to build with others who are taking those steps with me.  ~Evan Mulvihill, MD, Nationwide Children’s Hospital

In May, I attended the VERITY/Brigham Course in Rheumatology Clinical Research, thanks in part to a grant supported by CARRA. As a young investigator, I always have a million questions – How can I best design my study? What grant should I be applying for? What are the correct steps to take to achieve a successful academic career? These questions seem never ending, and the answers can be difficult to find. VERITY was a 6-day intensive clinical research course, aimed at early investigators like me, and it answered so many of these questions. The attendees were a mix of fellows and junior faculty, from rheumatology and pediatric rheumatology. Throughout the week, we attended lectures about clinical and translational research; engaged in workshops to refine our specific aims page or methods section of a planned grant proposal; and met with multiple research mentors, mostly from the Department of Rheumatology at the Brigham. The days were full, but we even had time for some fun while in Boston! I left this program with a much better sense of the path that I want to follow going forward as a young investigator, as well as the steps that I need to take in order to get to where I want to be. I was able to meet faculty members who were willing to be mentors, and with whom I am sure I will continue to work throughout my career. The VERITY course will be offered again in two years, and I highly recommend applying to attend for anyone who is interested in pursuing an academic research career in rheumatology. Thank you CARRA for this opportunity! ~Rebecca Trachtman, MD, Hospital for Special Surgery/Weill Cornell Medicine

Fall 2018 CARRA-Arthritis Foundation Grant Cycle to Open Soon!

Applications for both Large Grants and Small Grants will be due October 1. LOI’s are required for those submitting Large Grants (only) and are due September 1. To be eligible to apply, the project PI for all grants must be a current CARRA member who is up to date on membership dues and membership information (location, contact information, and membership status) is up-to-date. Fellows, residents, and CARRA Executive Committee members are not eligible. For more information, including details on what information needs to be included in a large grant LOI, please review the information posted on the CARRA website for each grant type.

Grant Deadlines
Large Grant Letter of Intent (LOI) due: September 1
Large Grant Applications Due: October 1
Small Grant Applications Due: October 1

The Arthritis Foundation and CARRA are Working Together to Advance Regulatory Understanding of JIA Patient Needs

The world’s largest network of arthritis patients – the Arthritis Foundation, and the largest network of pediatric rheumatologists in North America– the Childhood Arthritis and Rheumatology Research Alliance (CARRA) are hosting the Juvenile Idiopathic Arthritis Patient-Focused Drug Development (PFDD) meeting. This meeting will provide the U.S. Food and Drug Administration (FDA) and industry the opportunity to hear directly from patients and their families on how this disease affects their lives, their experiences with current treatments, and how clinical trial design can be more patient-centered. The meeting takes place in Washington, D.C. on August 2, 2018 from 9am to 3:15pm ET and will be held at the Grand Hyatt Washington. Dr. Janet Woodcock, Director of the FDA’s Center for Drug Evaluation and Research, will be among the FDA leadership attending the meeting, and will be providing opening remarks. 

Patient and Parent panelists will tell their stories and address questions from the audience.  Patients, parents and caregivers also will have the opportunity to relay their experiences of living with JIA and ask questions.  Participation in the meeting is available in-person or via webinar. CARRA members can click here to register for the meeting. Learn more about the FDA PFDD Initiative 

The Latest CARRA Registry Newsletter is Now Available!

Check out the CARRA Registry Newsletter! This newsletter was created to keep families informed of all the latest happenings in the CARRA Registry, STOP-JIA and FROST studies. New issues will be published quarterly and posted on the CARRA website at Or, you (and your patients) can sign up to receive new issues via email. To sign up, please fill out the subscription form using the subscribe button below.

CARRA Activities at ACR 2018 – Save the Date (Tentatively Monday, October 22 at 6:30)!

Join CARRA in Chicago during the 2018 ACR/ARHP Annual Meeting. The ACR meeting will take place October 19-24. CARRA is working out the details regarding our set of activities and will provide an update as soon as possible. As in previous years, CARRA anticipates holding a Membership Meeting, followed by a reception co-sponsored by the Arthritis Foundation. The tentative date for the CARRA Membership meeting and co-sponsored reception is Monday, October 22. We hope to see you there!

Important Upcoming Dates

Registry Announcements

STOP-JIA Update: We need to enroll 14 more STOP-JIA patients to reach the 400 patient enrollment goal by June 30! Also, remember to make every effort to enter data for the 12 month visit for STOP-JIA patients (this is the primary endpoint visit)!

Welcome our Newest Registry Site!

Akron Children’s Hospital is the newest CARRA Registry site, to begin enrolling patients. The site is led by PI Dr. Kate Phillippi. Akron Children’s was officially opened to enrollment on June 12, 2018 and has already enrolled their first patient in the Registry! Congrats to our newest site! CARRA is excited to have you on board!

Enrollment Update (as of 6/22/18)

Arthritis Foundation Updates


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) (, 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.