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CARRA Newsletter-August 2017 Issue 2

 

Research at the Arthritis Foundation 2017 JA Conference, Indianapolis

The Indianapolis JA Conference held from August 10-12 marks the first time research activities have been incorporated into the JA Conference agenda.  The Arthritis Foundation staff worked with CARRA researchers to recruit parents and patients to assist with two important NIH-funded studies:

  • INitial TReatment Of Juvenile Idiopathic Arthritis (INTRO-JIA), PI: Sarah Ringold (Seattle).  Anne Murphy, PhD, JIA parent and researcher from the University of California, San Diego facilitated a focus group of 11 parents for INTRO-JIA, a clinical trial that will test different biologics with methotrexate compared to methotrexate alone as initial treatment for polyarticular JIA. The focus group sought input about how to ensure that the trial is as parent/child-friendly and successful as possible.
  • Pediatric Patient Reported Outcomes in Chronic Diseases (PEPR), PIs: Laura Schanberg (Duke), Emily von Scheven (UCSF) Bryce Reeves (Duke). Qualitative expert Maihan Vu, DrPH from UNC-Chapel Hill, along with psychometricians and researchers from UNC and Duke, facilitated two focus groups for the PEPR Study at the recent JA Conference.  Separate focus groups were held for teens and parents. Nine teens with JIA and nine parents of children with JIA met to help researchers better interpret scores for patient reported outcomes (PRO) measures.
CARRA
Kelly Mieszkalski, Peter Chira, Guy Eakin

In addition to the above research activities, the AF’s program included following research-related sessions that were also conducted at the Houston JA Conference in July:

  • Yuki Kimura presented with Guy Eakin from the Arthritis Foundation about how the CARRA-AF partnership is moving forward pediatric rheumatology research, and how parents and patients can get involved. 
  • Laura Schanberg, JIA parent Vincent Del Gaizo, and the AF’s Director of Patient Engagement, Suz Schrandt, conducted an interactive session with patients/parents helping them to find their roles in the research process.

CARRA expresses its sincere appreciation and gratitude to:

  • The parents and patients who participated in the research activities, attended the research related sessions and those who signed up for PARTNERS; 
  • The following CARRA members for participating in the Indy JA Conference: Michael Blakely, Scott Canna, Peter Chira, Alexi Grom, Yuki Kimura, Tom Klausmeier, Esi Morgan, Kathleen O’Neil, Amy Rakestraw, Laura Schanberg, Brandi Stevens, Emily von Scheven, Stacey Tarvin.
  • The Arthritis Foundation, for organizing the Conference and recruiting families to participate in these important research activities.
  • All the families and CARRA members that support the Arthritis Foundation and CARRA partnership.

Please let any families who are interested in registering their availability for PARTNERS research activities to go to: http://pcornet.org/patient-powered-research-networks/pprn10/.  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.

We are looking forward to expanding the research opportunities available to families at future JA conferences. The 2018 JA Conferences will be held in Seattle (June 28-July 1) and Washington DC (August 2-5).


Registry Update


Announcements and Reminders

CARRA Grant Scientific Review Committee
Call for Nominations

CARRA is seeking reviewers to serve on CARRA’s Grant Scientific Review Committee (SRC).  Committee members will be responsible for reviewing CARRA’s internal Small, Large and Fellow Small grants. The term of appointment is 3 years, renewable.  Senior and novice reviewers are encouraged to apply (fellows are not eligible).  We are also seeking one individual to serve as committee chair. Click here for more information about the committee including selection process and eligibility of committee members.

Deadlines
Tuesday, August 29: Nominations are due
Tuesday, September 5: Applications are due


Ethics Committee
Call for Nominations

The CARRA Elections Committee is seeking nominations for the Ethics Committee (5 open positions). You may nominate yourself or someone else. Terms will be 2 years; however, 2 -3 members of the inaugural committee will be asked to serve 3 year terms. Click here for more information including eligibility, scope of work, and timeline for elections.

Deadlines
Friday, September 1: Nominations are due
Thursday, September 14: Applications are due


CARRA Grant Submission System is Now Available!

The next round CARRA grant applications are due October 1, 2017. Both small (up to $25k) and large (up to $50k) grant applications will be accepted. LOIs are required for all large grant submissions and are due September 1. Submit your LOIs and grant applications through the new CARRA Grant Submission System. To access the system, visit the Grants & Funding page on the CARRA website. There you will find information about upcoming grant deadlines, application templates, and access to the grant submission form. When accessing the submission system, you will be asked to login using the same username and password used for renewing your membership and/or registering for the 2017 Annual Meeting. Please note: This may be different than your login credentials for the Members-Only Collaboration Site (Wiki). If you have difficulty logging in, please contact Brian Mondragon Jones ([email protected]) in the CARRA Business Office. If you have questions about grant eligibility, contact Kelly at [email protected].


Publication Review Form

Don't forget! All CARRA-related publications and presentations which include results derived from data and bio specimens collected via the CARRA Registry protocols and sub-studies as well as surveys and other publications related to the use of CARRA infrastructure for mailing lists, conference time, and funding are subject to the CARRA Publication and Presentation Guidelines. In order to expedite the review process, we have set up an online form for submitting your materials for review.  Use this form to submit abstracts, papers/manuscripts, meeting proceedings, posters, press releases, and slides for review by the Publications committee. Please allow 7 days for all submissions, except papers/manuscripts, which have a review time of 3 weeks. If you have any questions about the publication review process, please contact CARRA Director of Administration, Brian Mondragón Jones ([email protected]).

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.”


Fall 2017 Educational Webinar
Avoiding Common Caregiver Mistakes When Your Child Has Arthritis

The added stress that comes with being a JA parent can affect your child’s quality of care and the quality of care you give yourself. This webinar will address some common caregiver mistakes, and offer real-life solutions so you can better manage and advocate for your child’s health; care emotionally and physically for yourself, your child, and your family; and maintain healthy relationships and career performance.

Join Catherine Boswell, PhD to learn about common caregiver mistakes and how to solve them so you can better manage the health and wellbeing of your child, your family and yourself.

WHEN: Wednesday, November 1, 2017
TIME: 7:30 pm EST

Register and view past Educational Webinars Online!
www.kidsgetarthritistoo.org/resources/webinars

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.