News

CARRA Newsletter - May 2019 Issue 1

 

Call for Nominations/CARRA Elections:  Cross Cutting Research Committee Leadership & Finance Committee

Deadlines:
May 20 – CCC Chair and Finance Committee Nominations Due
June 24 – CCC Vice Chair Nominations Due

In this Issue...

CARRA Elections

Manuscript RFA: Analyses of CARRA Registry Data

Walk With Team CARRA

ASM 2020: Save the Date

Juvenile Myositis Care & Research Conference

Registry Enrollment Update

Upcoming Events

Arthritis Foundation Updates

The CARRA Steering Committee recently approved the formation of a new research committee—the Cross Cutting Research Committee.  This new research committee will accommodate current and future research activities focused upon issues pertinent to chronic rheumatic disease management across disease states, and have leadership that serve on CARRA’s Steering Committee.  Of CARRA’s current workgroups, transition and mental health workgroups may be included in this committee. Potential future workgroups for which we know there is interest and which may fit in this committee include:  telehealth research, reproductive health research, cardiovascular health research.  CARRA is now seeking nominations for the Chair and Vice Chair of the new Cross Cutting Research Committee, as well as nominations for 2 open Finance Committee positions.  See further details below and visit the CARRA website for additional information.

Steering Committee Positions

Click on the links below to review the Scope of Work for each open Steering Committee position*: 

*Terms for these newly elected Steering Committee positions will be 10/1/19-6/30/22.

Finance Committee Positions (2 positions available, nominations due May 20)

View Committee Charter and Committee Member Responsibilities

**Terms for the Finance Committee positions are 7/1/19-6/30/21.

Click here to submit a nomination for yourself or someone else for the above open positions.

Email [email protected] with any questions related to these positions or the election process.


Manuscript RFA: Analyses of CARRA Registry Data

Applications Due: June 14

CARRA is pleased to announce the availability of funds to support production of a manuscript by funding statistical analyses of existing CARRA Registry data by biostatisticians and data analysts at the Duke Clinical Research Institute (DCRI), the Data Coordinating Center (DCC) for the CARRA Registry. The purpose of this opportunity is to engage the CARRA community in highly relevant clinical research and accelerate the publication of sophisticated high-impact analyses of Registry data by utilizing DCRI’s familiarity with the CARRA Registry database.


Walk With Team CARRA!

CARRA is very grateful for our partnership with the Arthritis Foundation. As you may know, the Arthritis Foundation has been a steadfast supporter of CARRA since its inception and is a major partner in support of our research to improve outcomes for children with rheumatic diseases.  As such, we are very excited to be participating in the Arthritis Foundation’s Walk to Cure Arthritis events around the country.

CARRA’s “Duke Rheumatology Team” was out in full force this past Saturday for the Walk to Cure Arthritis Triangle event, celebrating those living with arthritis while helping the event to raise almost $70,000 for research, resources and a cure!  Duke’s Walk Team of pediatric rheumatologists, fellows, nurses, patients, babies and a couple of pups walked the 3-mile trek to show their support for all those affected by arthritis. The day was a huge success and a lot of fun as event attendees visited sponsor booths, placed bids in a silent auction, participated in corn hole and bubble blowing, and were  also treated to a performance by Durham’s Bouncing Bulldogs Jump Rope Team.  Team Captain and CARRA member Heather Van Mater was celebrated as the event’s Medical Honoree. Click here to see photos from the day!

Thank you to all of you who are participating in your local Walk to Cure Arthritis events.  If you are not yet signed up, we encourage you to join one of CARRA’s existing teams or start your own! Click here to see a list of Walk sites and contact Vincent Del Gaizo ([email protected]) for help starting your own new team. If you do not have a Walk event in your area or you are unable to start a new team - please consider donating to our CARRA National Team by clicking here. We hope you will share this link with your friends, family and patient families, as well!  Be sure to send your photos to [email protected] so we can include them in our next newsletter!

If you are interested in hosting a CARRA table at your local Walk event and would like CARRA materials (such as CARRA and CARRA Registry bracelets, CARRA pens, CARRA Registry newsletters and brochures) to hand out to Walk participants, contact the CARRA business office at least two weeks prior to your event at [email protected]. Send us your photos so we can include them in our next newsletter!

Thank you for your support of CARRA and the Arthritis Foundation!


ASM 2020: Save the Date!
Join us in New Orleans April 26-29!


Reminder: 2019 Juvenile Myositis Care and Research Conference

Cure JM Foundation and Ann & Robert H. Lurie Children's Hospital of Chicago are hosting the 2019 Update on Juvenile Myositis Care and Research on Friday, June 21, 2019 from 7:30 am - 3:30 pm at Ann & Robert H. Lurie Children's Hospital in Chicago.

This free conference is open to all physicians and members of the medical community with a special focus on those in pediatrics, rheumatology, dermatology, and neurology.

Learning Objectives:

  • Identify best practices in diagnosing and treating patients with Juvenile Myositis (JM).
  • Apply latest developments in myositis research to clinical care.
  • Examine specialized management issues relevant to JM patients.
  • Discuss JM case studies to make treatment plans to optimize care.

This event is FREE, and includes breakfast and lunch, but registration is required. Registration details are available at http://www.curejm.org/medical_professionals/medical_conference.php


Registry Enrollment Update (as of 5/10/19)


Important Upcoming Dates


Arthritis Foundation Updates

 

iPeer2Peer Mentorship Program

The Arthritis Foundation offers the iPeer2Peer mentorship program in partnership with iOUCH (improving Outcomes in Child Health through Technology) research team at the Hospital for Sick Children in Ontario, Canada. The goal of this program is to help and support teens (13 - 17) with juvenile arthritis (JA) or related childhood rheumatic diseases by connecting them with a trained young adult mentor who shares similar experiences growing up with JA or related childhood rheumatic diseases. Marketing materials available for clinics through Arthritis Foundation local offices. Continuous mentee recruitment, online application for parents and teens for more details visit www.arthritis.org/ipeer2peer

JA Power Packs

The Arthritis Foundation’s JA Power Pack is a toolkit with useful information and tools to assist newly-diagnosed children and teens, as well as their parents. These resources were designed to give you and your family the power to make living with JA easier. Knowing what to expect and how to deal with it is the key to better living with JA. Please encourage the patients and families you serve to order a JA Power Pack in one of the following ways:

  • Call the Arthritis Foundation toll-free number, 1-800-283-7800 to place an order
  • Obtain an order form from their care provider and return to the Arthritis Foundation Office printed on the form
  • Complete an updated order form during their clinic visit so their care provider can send to the Arthritis Foundation office
  • Call their local Arthritis Foundation office and order over the phone Health Care Providers can request a tear-off pad of JA Power Pack order forms by contacting the Arthritis Foundation local office in your area