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CARRA Newsletter-July 2017 Issue 2

 

CARRA Grant Scientific Review Committee

Be on the lookout for a Call for Nominations for CARRA’s soon to be formed Grant Scientific Review Committee. We are seeking both senior and junior investigators to serve as reviewers. Novice reviewers are encouraged to apply.  Reviewers must be >1 year post-training (clinical or post-doctoral fellowship).  If appointed, terms are 3 years and are renewable.

Why Serve on the Grant Scientific Review Committee?

Peer review of grant applications is critical to the CARRA grants process. Peer reviewers are tasked with evaluating the scientific merit of CARRA grant applications in a fair, independent, expert and timely fashion that is free of conflict of interest. The review process plays a very important role in CARRA’s mission. Peer assessment is a critical factor determining the character and quality of the research supported by CARRA funding.

By volunteering to perform peer review, members can provide service to the CARRA community and promote high quality research in pediatric rheumatology. For early or new investigators, participation in grant review is a valuable opportunity to gain experience in grant development that will support their own career research activities. Reviewer panels will be selected from the committee for each RFA.

For more information about CARRA’s Grant program, visit the grants page of the CARRA website.


2017 Houston JA Conference Recap

CARRA members connected with JA families while participating in the Arthritis Foundation’s JA Conference in Houston from July 13-16.  CARRA President Yuki Kimura presented with AF’s Guy Eakin, SVP of Scientific Strategy, on the CARRA-AF partnership and research priorities. Past President Laura Schanberg, long time CARRA supporter and JIA parent Vincent Del Gaizo, and the AF’s Director of Patient Engagement, Suz Schrandt, conducted a highly interactive session with patients/parents helping them to find their roles in the research process. Thank you to additional CARRA members who presented at the conference, including Amanda Brown, Marietta DeGuzman, Ankur Kamdar, Esi Morgan, Andrea Ramirez, and Tiphanie Vogel.

CARRA’s Executive Director, Kelly Mieszkalski, met many of the AF parents and patients at the CARRA exhibit table, where JA mom and conference attendee, Heidi Barrett, shared how her connection with CARRA via Seattle Children’s Hospital has been able to make a difference for her family:

CARRA
Barrett Family (from Left to right: Levi, Heidi, Maggie, Liam, John. Not pictured: Johnny and James) and Kelly Mieszkalski

I used to joke that my four children with juvenile psoriatic arthritis had the non-sexy disease of all the arthritis. It seemed like all the research studies that we might possibly qualify for were focused on a different type of arthritis than the ones my kids had. As a parent, you feel absolutely helpless and all the power has been taken away from you each time another one of your precious babies is diagnosed with JIA (specifically Juvenile Psoriatic Arthritis). CARRA has given my family our sense of power back. By registering with CARRA and participating in research studies, we are doing our part to helping find a cure so no other family will hear those words, " I am sorry, your child has juvenile idiopathic arthritis".

CARRA is also looking forward to participating at the Indianapolis JA Conference from August 10-13:

CARRA
Kelly Mieszkalski, Yukiko Kimura and Laura Schanberg at the JA Conference in Houston.
  • Yuki Kimura will again do a presentation with Guy Eakin from the Arthritis Foundation about the partnership and research priorities;
  • Emily von Scheven and the PEPR study team from UNC will conduct separate bookmarking sessions with patients and parents;
  • Parents and patients with poly-JIA will participate in a focus group that will inform the design of the CARRA INTRO JIA (formerly COMPARE) study;
  • Families will be encouraged to register for participating in the PARTNERS network via the AF website. Families who join PARTNERS can volunteer for many levels of participation: to take online surveys, serve on a PARTNERS committee, contribute to a research study, provide ideas for a research topics or participate in a research study; 
  • Kelly Mieszkalski will be the CARRA table in the exhibit area and encourage families to join PARTNERS;
  • Additional CARRA members to present to conference attendees!

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 and meeting more of you in Indianapolis JA Conference in August!

Congratulations PReS Travel Award Recipients

CARRA has selected three Early Investigators to receive travel awards to participate in the Pediatric Rheumatology European Society (PReS) annual meeting and PReS Young Investigator Meeting in Athens, Greece from September 13 through September 17. Hanna Kim, NIH-NIAMS; Rebecca Sadun, Duke University; and Grant Schulert, CCHMC will each receive up to $2500 in travel support to participate in the meeting and present their abstracts. Their participation in the meeting will continue to enhance collaborations between the CARRA Early Investigator group and the PReS Young Investigator group and to network and collaborate with other international colleagues.


CARRA REGISTRY UPDATES

CARRA Registry Enrollment Continues to Grow

Currently we have 3478 subjects enrolled in the Registry, and the STOP-JIA and FROST has been enrolling smoothly! Please remember to collect SAMPLES on STOP-JIA and FROST patients enrolled (prior to starting treatment if at all possible).

  • 226 of 400 STOP-JIA (Start Time Optimization of biologics in Poly-JIA) patients enrolled (13 with biosamples)
  • 16 of 200 FROST (FiRst Line Options in Systemic JIA Treatment) patients  enrolled (3 with biosamples)
  • 5 of 450 PEPR patients enrolled

REMINDER: ALL JIA patients (not just select categories) can be enrolled, in addition to new onset lupus patients.

Registry Site Kudos
Congratulations to the University of Chicago Medical Center for enrolling their first two FROST patients last week, and to Duke Children’s Hospital for enrolling their third PEPR patient!


ANNOUNCEMENTS AND REMINDERS

Call for Nominations Announcement in less than 2 weeks
Interested in serving on a CARRA Committee? CARRA will be putting out calls for nominations for 1) Ethics Committee members and 2) Scientific Grant Review Committee members. Look for the announcements by soon!

CARRA Grant Deadlines are coming up very soon!

  • The deadline for the Large Grant LOI is only a little over one month away (9/1).
  • Large and Small grant applications are due in a little over two months (10/1).
  • Our online grant submission system will be available prior to 9/1.  Stay tuned for updates!

Special ACR Early Career Investigators session at ACR Meeting: The session, organized by the ACR’s Early Career Investigators Subcommittee will take place at the ACR Annual Meeting in San Diego on Wednesday, November 8 from 9-10:30am. This is an interactive session where attendees can meet one-on-one at roundtables with NIH program officers and disease foundation representatives after some brief introductory talks. Both sides have the opportunity to meet each other to make sure that the timing and funding mechanism for a grant proposal is correct. You also have the opportunity to review your Specific Aims page with program officers to see if the research goals of your proposal are appropriate for the organization and funding mechanism.

Lupus Foundation of America Announcement: The 2017 Call for Nominations for two prestigious awards in the field of lupus research: 1) the Evelyn V. Hess, MD, MACP, MACR Award, and 2) the  Mary Betty Stevens, MD, Young Investigator Prize. See the LFA’s website for details and contact [email protected] with questions. The nomination period closes August 7, 5pm EST.

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”.


2017 JA Camps
Registration for many of our 2017 camp programs is still open! View our brand-new JA Camps website to browse our camps and register today! If you have additional questions, please contact your nearest Arthritis Foundation office. www.arthritis.org/JACamps

Arthritis Foundation Juvenile Arthritis
The Arthritis Foundation provides opportunities for parents and children with all types of rheumatic diseases to meet other families at events, such as education days and family fun outings, in locations across the country. These connections are vital. They create friendships that last a lifetime, expanding the Arthritis Foundation’s extended family network.