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CARRA Newsletter-August 2018 Issue 1

Arthritis Foundation JA Conference Recap - Seattle & Washington, DC

The Arthritis Foundation's JA Conferences are amazing events where families and children affected by childhood rheumatic diseases come together with other affected families, health care professionals, and experts from around the country for a 4-day weekend filled with education, networking and fun.   This year, over 1750 attendees gathered to share stories, exchange tips that can make living with their condition easier, and build lifelong memories and friendships—all while learning more about their disease.  This year, the conferences were held in Seattle and Washington DC.

 JA Conference – Seattle
The first conference took place in Seattle, June 28 – July 1.  Highlights from this conference include:

  • CARRA President, Robert Fuhlbrigge, Children’s Hospital Colorado, presented with the Arthritis Foundation’s Guy Eakin, SVP of Scientific Strategy, and CARRA member Esi Morgan, Assistant Clinical Director at Cincinnati Children’s Hospital, to discuss research projects and the critical roles of the partnerships between CARRA, PR-COIN, and PARTNERS.

In this Issue...

JA Conference Recap

PReS Travel Award Recipients

CARRA Announcements

CARRA Registry Updates

Upcoming Dates

Arthritis Foundation Updates

  • Presentations on the latest on patient engagement in research and how parents/patients can participate were delivered by Suz Schrandt, Arthritis Foundation’s Director of Patient Engagement, Liz Smith, long-time volunteer with the Arthritis Foundation, and 2018 Conference Chair Kate Kuhns.
     
  • CARRA members Sarah Ringold and Kristen Hayward, both of Seattle Children’s Hospital, led a session focused on inactive disease and remission in JIA and presented recent data regarding management of these disease states.
     
  • Kristen Houghton, pediatric rheumatologist and sports medicine specialist at BC Children’s Hospital in Vancouver, presented a roundtable session on strategies to increase physical activity, safe sport participation, and injury prevention.
     
  • Matthew Basiaga, pediatric rheumatologist and Acting Assistant Professor of Pediatrics at Seattle Children’s Hospital, and Amish Dave, rheumatologist at Virginia Mason Medical Center, lead a young adult discussion and brainstorming session on how to make the transition to adult easier and more effective.
     
  • Sarah Baxter of Seattle Children’s Hospital led a small group discussion and Q&A on psoriatic arthritis, ankylosing spondyloarthritis, and enthesitis-related arthritis.

JA Conference – Washington, DC

The second conference took place in Washington, DC, August 2 – 5.  Here are some highlights from DC:

  • CARRA Finance Chair, Robert Colbert, presented along with the Guy Eakin and Esi Morgan on research projects and the role of the partnership between CARRA, PR-COIN, and PARTNERS.
     
  • Presentations on patient engagement in research were given by Ann Palmer, Arthritis Foundation President and CEO, Rowland Chang, Chair of the Arthritis Foundation Board of Directors, and Kate Kuhns.
     
  • CARRA member Daniel Horton, pediatric rheumatologist and clinical and translational researcher at Rutgers University continued his work leading the Inactive Disease Work Group by holding a session to present recent data regarding these disease states.
     
  • Tova Ronis, pediatric rheumatologist at Children’s National Health System in DC and CARRA Publications Committee Chair, presented a session exploring the challenges teen patients and families face during the transition from adolescent to adult.
     
  • Nora Singer, Metro Health, held a focus group of sJIA teens to guide protocol development for a stem cell therapy project.
     
  • CARRA's new Director of Strategic Partnerships and Patient Engagement Vincent Del Gaizo helped Guy Eakin and Suz Schrandt of the Arthritis Foundation with facilitating a round table discussion to break down barriers to participating and partnering in research. 
     
  • Vincent Del Gaizo presented his journey to partnering in research to the JA Dads Group.

At both conferences, there was a buzz around the CARRA table manned by CARRA’s Director of Research Operations Miranda Wenzlaff, where families were eager to learn more about CARRA, the Registry and research.  Many parents expressed their appreciation and willingness to participate in the Registry to learn the safest and best way to treat their children.  Due to the success of the many research activities in Seattle and DC, there are ongoing discussions with the Arthritis Foundation to work together in creating a research track for future conferences. We will keep you posted on this exciting initiative!  

CARRA would like to extend a huge thank you to all the families and CARRA members that support the Arthritis Foundation and CARRA partnership. We look forward to seeing you at the 2019 JA Conferences in Minneapolis, MN, and Houston, TX!


PReS Travel Award Recipients

CARRA wants to congratulate CARRA Early Investigators Melissa Mannion of the University of Alabama at Birmingham, and Yongdong (Dan) Zhao of Seattle Children’s Hospital for being selected as this year’s recipients of the PReS (Pediatric Rheumatology European Society) Travel Awards.  Drs. Mannion and Zhao will be traveling to Lisbon, Portugal to represent CARRA Early Investigators, along with Early Investigator Chair Erica Lawson and Vice Chair Kaveh Ardalan, and participate in the 2018 PReS annual meeting and the PReS Young Investigators Meeting.  Dr. Mannion’s abstract “Switching of Biologic Agents among Children with JIA in the Childhood Arthritis and Rheumatology Research Alliance Registry” has been accepted for a Poster Presentation at the Young Investigators Meeting and the main Congress.   Dr. Zhao’s abstract “Interrater Reliability of a Standardized Scoring Tool to Report MRI Findings in Chronic Nonbacterial Osteomyelitis” has been accepted for Oral Presentation at the main Congress. Through this award, CARRA will provide each recipient with up to $2,500 in travel support. We look forward to hearing all about their experience at this meeting in a future issue of the newsletter!


CARRA Announcements
 

CARRA Activities at ACR 2018 – Save the Date

Join CARRA during the 2018 ACR/ARHP Annual Meeting in Chicago on Monday evening, October 22 at the Hyatt Regency McCormick Place. We will hold a membership meeting at 6:30 PM, followed by a reception which will be co-hosted with the Arthritis Foundation. Registration will be open to all ACR attendees.

Date: Monday, October 22
Location:
Hyatt Regency McCormick Place

CARRA Meeting
6:30-7:30 pm

CARRA-Arthritis Foundation Co-Hosted Reception
Monday, October 22
7:30-10:00 pm

Be sure to mark your calendars!


Apply Now!! CARRA-Arthritis Foundation Large Grant Applications Now Open!

CARRA is pleased to announce the opening of the current Large Grant cycle. This funding opportunity for CARRA members 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. If you are planning to submit for the upcoming cycle, please be sure to review the information available on the CARRA website.

If you have any questions about the submission process, please contact Portlynne Joseph ([email protected]).

VIEW LARGE GRANT SUBMISSION REQUIREMENTS

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

         


CARRA Registry Associate – RFA

Applications Due: August 15
Term: October 1, 2018 – June 30, 2020

CARRA is now accepting applications for a CARRA Registry Associate position. The position will support 15% effort for 21 months using funds received via our partnership with the Arthritis Foundation.

The CARRA Registry Associate will:

  • Serve as liaison between DCRI and the CARRA SLE and JDM groups regarding Registry enrollment, data monitoring, and facilitate data acquisition and facilitate abstract and manuscript preparation.
  • Provide oversight of and mentorship to CARRA Registry interns
  • Actively participate in weekly Registry Operations team calls (Mondays at 11:00am ET), bi-weekly Registry Intern conference calls, and occasional colloquia or program workshops.
  • Work with the CARRA Registry Scientific Director (Tim Beukelman), the Registry PI’s (Yukiko Kimura and Laura Schanberg), and the Director of Research Operations (Miranda Wenzlaff).
  • Attend the CARRA Annual Meeting and Operations Team Retreat, as well as any additional meetings involving the CARRA Registry.

Eligibility
Applicants must be current CARRA members, have completed a pediatric rheumatology fellowship and be employed as a pediatric rheumatologist in the United States or Canada. Prior experience with the CARRA Registry is required. Prior experience as a CARRA Registry intern is desirable.

View the Full RFA on the CARRA Website.


Invitation to Contribute to Case Series of JDM Patients with and Pneumocystis Pneumonia

During the 2017 CARRA Meeting, the CARRA JDM group discussed the surprising number of cases of Pneumocystis pneumonia (PCP) in patients with JDM.  We are interested in learning more about these patients.

If you have had patients with PCP pneumonia and Juvenile Dermatomyositis, you may be interested in participating in this retrospective case series, so we can learn more about this devastating complication. Anyone who contributes complete data will be included as an author in a future publication.

We have drafted a REDCap database to capture the characteristics of these patients, to try to identify risk factors for PCP and help inform guidelines for PCP prophylaxis in JDM patients.

Please contact Jessica Neely ([email protected]) or Susan Kim ([email protected]), if you have questions, or would like to receive instructions for accessing the survey.

Since all data will be collected in a de-identified fashion it is IRB exempt for any institution submitting 3 or fewer cases. We estimate that it may take up one hour of your time to complete the survey for a complex patient.

Thank you!
Susan Kim, Jessica Neely & Sara Sabbagh


CARRA Registry Updates

STOP_JIA Enrollment Extended
STOP-JIA enrollment has been extended until we reach 400 patients. Currently, 392 patients have been enrolled. Please continue to screen all new untreated pJIA subjects. Once we reach 400 subjects, we will close enrollment. Thank you for your hard work in achieving this goal!

Enrollment Update (as of 8/3/18)


Important Upcoming Dates


Arthritis Foundation Updates

JINGLE BELL RUN - #JingleBellRun
The Arthritis Foundation’s original Jingle Bell Run is a fun way to get decked out and be festive, while racing to raise funds and awareness to cure arthritis. Put on your favorite holiday costume or tie jingle bells to your shoelaces. ’Tis the season to live it up and be jolly for a reason!  Form a team of friends, family and co-workers to run or walk, spread smiles and good cheer and be a Champion of Yes! Visit www.jbr.org to find an event near you.

Arthritis Foundation Local Leadership Boards
In communities nationwide, the Arthritis Foundation is working with local volunteers to build Leadership Boards to achieve our goals in fundraising, volunteer engagement, advocacy, juvenile arthritis and other pediatric rheumatic diseases, and help and support. To get involved on your Local Leadership Board, please contact your local Arthritis Foundation staff.