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CARRA Newsletter - November 2018 Issue 1

 

Recap of CARRA Activities at ACR 2018

Thank you to everyone who joined us at the CARRA activities held during the 2018 ACR/ARHP Annual Conference from October 19-24. We had great turnouts at all of our events including the CARRA meeting, the CARRA-Arthritis Foundation Co-hosted Reception, and CARRA Fellow and Early Investigator Reception. Additionally, several CARRA-related projects were presented in sessions and as posters. Read on for more information and to see some photos of the action.

CARRA Meeting

Approximately 300 people attended CARRA’s Annual Meeting at ACR. CARRA President Rob Fuhlbrigge updated attendees on CARRA, the CARRA Registry and other CARRA research activities. CARRA Past-President Yuki Kimura then introduced the second portion of the agenda, which included a panel discussion about two important meetings that were planned in collaboration with the Arthritis Foundation and held earlier this year. Panelists included the Arthritis Foundation's Guy Eakin and Suzanne Schrandt, CARRA's Vincent Del Gaizo, and JIA parent Corrine Pinter.

In this Issue...

CARRA at ACR 2018 Recap

2019 CARRA Registry Intern RFA

New Grant Deadline

Registry Enrollment Update

2019 Registry Retreat

Upcoming Events

Lupus Conference

Arthritis Foundation Updates

The first meeting, “New Approaches to Evaluate the Efficacy and Safety of Therapeutics for JIA, A CARRA-Sponsored discussion”, was held on April 22 in Denver and included patients, parents, clinicians, research investigators, clinical trial experts, as well as representatives from industry, the FDA and EMA, and the Arthritis Foundation.  The meeting addressed the critical issues we face today in clinical trial design that will impede timely authorization of new medicines for JIA. The second meeting was an externally-led FDA Patient Focused Drug Development (PFDD) meeting in Washington DC on August 2. The goal of the meeting was to inform the FDA and industry about patient/caregiver viewpoints about the disease and treatment burdens of JIA, including the urgent need for new and better treatments. The panelists provided their impressions of the value of these two meetings from the perspectives of CARRA, the Arthritis Foundation and the patient/parent participants. Publications resulting from both meetings will be available soon.  

         

CARRA/Arthritis Foundation Co-hosted Reception

Attendees gathered after the CARRA Meeting to network and visit with colleagues, friends, and parent/patient attendees, over great food and drinks. CARRA and the Arthritis Foundation each staffed displays with more information about each organization.

CARRA Presentations

14 CARRA-related projects were presented at ACR, including 6 that were supported by CARRA-Arthritis Foundation grants. For more information about these projects, please visit the CARRA website here.

CARRA Fellows/Early Investigator Reception

Over 75 CARRA Fellows and Early Investigators attended this networking reception on Sunday evening. It offered a great opportunity for attendees to get to know each other and meet CARRA leadership, while learning more about CARRA and our programs for Fellows and Early Investigators. 

Check out More Photos and Slides from CARRA Activities

View the PowerPoint presentation from CARRA Activities at the ACR meeting here.

View the Google Photo Gallery here.       

Special Thank You

We would like to extend a special thank you to the Arthritis Foundation for supporting CARRA’s activities at ACR and throughout the year.                                                                                                                                

APPLY NOW – CARRA Registry Intern – RFA 2019

Applications due December 13, 2018
Term: July 1, 2019 – June 30, 2020

CARRA is now accepting applications for up to two CARRA Registry Intern positions. The CARRA Registry Internship will require 25% effort for one year. The internship may be eligible for a one-year renewal, depending on availability of funds and intern productivity.  This opportunity is supported through funds received via our partnership with the Arthritis Foundation.

The CARRA Registry supports data collection on patients with pediatric-onset rheumatic diseases. This internship is designed to immerse the applicant in the operational, leadership and scientific aspects of CARRA’s multicenter observational registry which will be used to answer pressing questions about pediatric rheumatic diseases, including drug safety. This is a unique opportunity for the intern to interact intensively with the CARRA Registry leadership team; to learn skills and gain knowledge that will enrich subsequent pediatric rheumatology research and practice.

New Deadline for CARRA-Arthritis Foundation Fellow & Small Grants

CARRA offers members various funding opportunities to further research that leverages the CARRA network and positively impacts the pediatric rheumatology scientific community and advances the CARRA mission.

Please be advised that the CARRA-Arthritis Foundation Fellow and Small grant mechanisms have a new deadline of 11:59 PM PST on February 15, 2019. The online grant submission system will open in early December. The project start date for both grants will be July 1, 2019.

CARRA-Arthritis Foundation Fellow Grant

This funding opportunity is exclusively available for pediatric rheumatology fellows entering their third year who wish to perform a CARRA-related research project. The intent of this funding program is to augment the fellow’s research portfolio by supporting a project that extends, enhances or is distinct from their primary scholarly project, as defined and required by the ABP for Board eligibility. The project must not be necessary to meet the ABP requirement for scholarly work product, but it may be supplemental. Eligible investigators can apply for up to $25,000 in total project costs.

Complete details and application instructions for the Fellow Grants are available here.

CARRA-Arthritis Foundation Small Grant

This funding opportunity is available to support projects in development. Eligible investigators can apply for up to $25,000 in total project costs.  The research project can be a pilot, continuation of ongoing research, or other projects that move forward clinical or translational research that furthers the CARRA mission. Preference will be given to research that is collaborative in nature, which leverage current CARRA network resources and/or will further develop the CARRA network. New or early investigators are encouraged to apply and will be afforded special consideration.  

Complete details and application instructions for the Small Grants are available here.

LATE SUBMISSIONS OR APPLICATIONS NOT FOLLOWING THESE INSTRUCTIONS WILL NOT BE CONSIDERED

Email [email protected] with any questions related to CARRA-Arthritis Foundation Grants.

CARRA Registry Update (11/2/2018)

Save the Date! CARRA Registry Retreat - 2019

CARRA will be holding the first ever CARRA Registry Retreat on January 27-28, 2019 in Orlando, Florida. Attendees will fly in the evening before the retreat starts on January 27th, then participate in the one-day retreat and fly back the evening of January 28th.

This will be a one-day event aimed at engaging principal investigators, sub-investigators, and site coordinators in an interactive retreat promoting active participation in small group and panel discussions, brainstorming, role-playing, and training. The purpose of the retreat is to get both PIs and site coordinators together to train on Registry processes with the benefit of both perspectives. CARRA is encouraging participation from sub-investigators as well. Each site may send the PI, site coordinator, and 1 Registry sub-investigator to this retreat.

Please be sure to mark your calendars to come to Orlando from January 27-28, 2019! More details will be coming soon. We hope to see you there!

Important Upcoming Dates

Lupus Conference

Join us in New York on Friday, November 30, for The Life Course of Lupus: From Birth to Adulthood with Lessons Learned from the Bench.

This conference is for pediatric and adult rheumatologists and nephrologists, nurses, fellows, residents, students, and other health care professionals with an interest in pediatric and adult systemic lupus erythematosus and lupus nephritis.

For more information, please call Carol Brower, KUFA, at 212-629-9770 or 732-866-4444 or email: [email protected]

 

Arthritis Foundation Updates

 

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 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.

Champion of Yes

The Arthritis Foundation is the Champion of Yes. We exist to conquer arthritis and other childhood rheumatic diseases. We’ve been meeting the unique and urgent needs of families for 70 years. Working closely with such great research partners as the Childhood Arthritis and Rheumatology Research Alliance (CARRA) (www.carragroup.org), we’re investing millions of dollars in outreach and collaborative research that advances prevention, care and a cure for kids and teens with rheumatic diseases. Our tools and resources help more children say Yes to making life better.