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CARRA Newsletter - October 2019 Issue 1

 

You're Invited - Join CARRA at the ACR/ARP Meeting in Atlanta!                          

Over 20 CARRA-related abstracts will be presented during this year’s conference. Click here to see the list. We hope to see you at one or more of the sessions that will be presenting CARRA’s latest work!  

Please also join CARRA for the following events during the 2019 ACR/ARP Meeting:

In this Issue...

CARRA at ACR/ARP

Research is Hope

Recapture-JIA

2020 Elections

Registry Update

Arthritis Foundation Updates

Important Dates & Deadlines

 

CARRA Meeting: Monday, November 11:  6:30 - 7:30 PM

Westin Peachtree Plaza    
210 Peachtree St NW
Atlanta, GA 30303
10th Level, Savannah Ballroom

CARRA invites you to attend our annual meeting during the ACR/ARP conference! We will hold a one hour meeting at the Westin Peachtree Plaza to provide attendees with updates from CARRA and the Arthritis Foundation.

This event is open to all ACR attendees.

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CARRA-Arthritis Foundation Reception: Monday, November 11: 7:30 – 10:00 PM

Westin Peachtree Plaza
210 Peachtree St NW
Atlanta, GA 30303
6th Level, Chastain

CARRA and the Arthritis Foundation are excited to once again be co-hosting this year’s reception at ACR/ARP. Please join us for drinks and heavy hors d'oeuvres immediately following the CARRA meeting!

This event is open to all ACR attendees.

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Research is Hope

CARRA’s work provides hope for families.  Listen to what these families have to say about the impact of research and why they participate in studies by watching our new video!


New CARRA Registry Study: Recapture-JIA

 

" . . .  the biggest worry for me about stopping medication is that I’ll have a big flare or relapse and it will be something that will be difficult to control, or will take a long time to control.” - 22 year old patient with JIA

 

The Disease Recapture after Drug Discontinuation and Flare in JIA study (“Recapture-JIA”) is a new CARRA Registry study funded by the ACR’s Rheumatology Research Foundation (RRF). The study will address this common concern raised by patients and families by specifically studying recapture rates among children with JIA who stop their medications for well-controlled disease. It will measure how often JIA flares are well-controlled within 6 months of restarting medicine and also seeks to identify patient characteristics associated with successful or unsuccessful disease recapture.

Eligible patients include any child with JIA previously treated with systemic medication (DMARD and/or biologic) who is now restarting one or more medications for disease flare. We are asking that sites perform a CARRA Registry visit (new or unscheduled) for these children at the time of disease flare and also answer one additional question regarding duration of inactive disease. There is also an optional biospecimen collection for a subset of children.

All active CARRA Registry sites can participate in this study and no separate IRB approval or contracts are required. The study has an ambitious goal of enrolling 150 children before 9/30/2020 so we appreciate you approaching all of your eligible patients.

Please feel to reach out to any of the study investigators or DCRI with questions!

                 
Sarah Ringold, PI
 
Tim Beukelman
 
Dan Horton
 
Yuki Kimura
 
Melanie Kohlheim
 
Laura Schanberg
 
Rae Yeung

Upcoming Steering Committee Elections: Ballots Coming Soon!

Voting for Round 1 of the CARRA Elections, which includes the positions of CARRA Finance Chair, Early Investigator Chair, SVARD Chair, and TRTC Chair, will open October 25. Eligible voting members, please keep an eye on your inbox for the email ballot. If you do not receive your ballot, please contact Brian Mondragón Jones ([email protected]). Voting will end November 4.

Round 2 Nominations will be open until December 20th for the following Steering Committee Positions:

1Position receives 5% salary support

  Vice Chair Elections
Nominations Due (by 8pm ET)   December 20
Nominee Applications Due (by 8pm ET) January 10
Voting Opens January 17
Voting Closes January 27
Elected candidates announced to the membership January 31

*in the event a run-off is needed in the first election, the timing of the 2 round of elections may be delayed.

Additional Committee Positions

The Ethics Committee and Publications Committee Chair elections will take place in the near future. More information regarding those opportunities will be available soon.


CARRA Registry Update

As of October 11, CARRA has enrolled 9,483 patients in the CARRA Registry, including:

  • 8,412 patients with JIA
  • 623 patients with SLE and related conditions
  • 143 patients with JDM or JPM
  • 15 patients with scleroderma

Other highlights include:

  • 296 biosamples have been collected!
  • 72 of 100 patients are now enrolled in the FROST study!

Thank you to all of our CARRA Registry sites for all of your hard work!

 

Save the Date!

CARRA is holding its second annual CARRA Registry Retreat for principal investigators, sub-investigators, and site coordinators on February 23-24, 2020, in Dallas, Texas. More details will be sent to sites in the coming weeks!


Arthritis Foundation Updates

 

Jingle Bell Run

The Arthritis Foundation’s Jingle Bell Run is the original festive race for charity, bringing people from all walks of life together to champion arthritis research and resources. All events have a timed 5K race with a USA Track & Field-certified course, but if you prefer to walk, no problem! There are also 1-mile options and kids runs at many events.

Put on your favorite holiday costume, enjoy fun activities and spread good cheer along with family, friends and co-workers. Jingle All the Way to a Cure for the 1 in 4 Americans with arthritis. 100 percent of your registration fee and fundraising efforts go to a great cause!

Learn More

 

2020 Fellowship Request for Applications

Application Deadline: Monday, December 16, 2019; 5:00 PM EST

The Arthritis Foundation is seeking applications from institutional program directors. The RFA is particularly interested in novel approaches in training to prepare the next generation of rheumatologists to meet the evolving needs of the community. For adult programs the focus i son creation of new ACGME accredited positions. A major change this year is that this RFA does not require new slots to be generated for pediatric and combined pediatric-adult programs. Application and instructions are available at https://proposalcentral.com/. After reviewing the criteria, those who intend to apply should email [email protected] to give the Arthritis Foundation a heads up, with the subject line: Fellowship – Yes.

 

JA Power Pack

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 your patients and their families 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 your 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.

Important Upcoming Dates

  • October 25: Round 1 Election Voting Opens
  • November 4: Round 1 Election Voting Closes
  • November 8: Round 1 Election Candidates Announced
  • November 8-13: ACR/ARHP Annual Meeting in Atlanta, Georgia
  • December 6: VERITY/Brigham Course in Rheumatological Clinical Research Applications Due
  • December 20: Round 2 Election Nominations Due (by 8pm ET)
  • January 10: Round 2 Nominee Applications Due (by 8pm ET)
  • January 17: Round 2 Election Voting Opens
  • January 27: Round 2 Election Voting Closes
  • January 31: Round 2 Election Candidates Announced
  • February 23-24, 2020: Registry Retreat in Dallas, Texas

Correction

In the first September issue of our CARRA newsletter, there was an error in the listing of CARRA Principal Investigators for the recently awarded CDC Lupus grant. Andrea Knight, MD, MSCE, is at the Hospital for Sick Children in Toronto, Canada, not at the Children’s Hospital of Philadelphia. Our apologies for this error.