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CARRA Newsletter - April 2019 Issue 2

 

2019 Annual Scientific Meeting: April 10-14

CARRA held its 15th Annual Meeting in Louisville, Kentucky with over 480 members, parents, patients, and other guests attending more than 85 separate meetings over the 5-day conference!

Meeting highlights included:

  • A highly entertaining opening session—a “Great Debate” on Treat to Target in JIA with Drs. Angelo Ravelli and Dan Solomon, moderated by CARRA’s Mara Becker.
  • The Arthritis Foundation’s Welcome and Poster Reception.
  • Plenary talks by Drs. Jim Witter and Bryce Reeve on PROMIS measures and PROs, and Dr. Gary Walco on the State of Pain Research.
  • The CARRA Dinner, including abstract and service awards, and game night!

With the Kentucky Derby coming up, meeting attendees received an extra special treat as the conference was held during “Thunder Over Louisville,” which included an airshow and spectacular fireworks on the closing day of CARRA.  What a special way to close out a great meeting!

In this Issue...

2019 Annual Meeting

Special Elections

CARRA Registry Informatics Internship

Manuscript RFA: Analyses of CARRA Registry Data

VERITY Deadline

CARRA Publications

Lupus Foundation Advocate of the Year Award

Walk With Team CARRA

Registry Enrollment Update

Upcoming Events

Arthritis Foundation Updates

Thank you to the Arthritis Foundation, our 2019 Annual Meeting sponsors, as well as everyone who attended the 2019 Annual Scientific Meeting and made it a huge success. We look forward to seeing you all at CARRA’s 2020 Annual Meeting in New Orleans from April 26-29!

A brief summary of each day including details, photos, and special features can be found below:

Visit the CARRA website for all information about the meeting!

       

CARRA Fellows enjoying themselves at the networking event held Wednesday night at Tavern on Fourth

The “Treat-to-Target Debate” from the Opening Session featured a lively discussion between Dr. Angelo Ravelli and Dr. Daniel Solomon, moderated by Mara Becker.

Travel Reimbursement & Evaluations: Due April 29

CARRA members, participants in the Pediatric Residents Program, parent and patient attendees, and invited speakers may be eligible for travel reimbursement for costs related to attending the Annual Meeting. In order to be eligible for reimbursement, your reimbursement request and a completed evaluation must be received by April 29.

  • The 2019 Annual Scientific Meeting Evaluation form can be found here.
  • Submit your reimbursement request here.
  • CARRA Members: Please review the full Travel Reimbursement Policy here.

Email [email protected] if you have any questions about travel reimbursement.


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

Deadlines: May 20 (Round 1) & June 24 (Round 2)

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.

Read the full article and see the elections timeline here.


CARRA Registry Informatics Internship

Competitive LOI & NIH Biosketch Due April 29
Applications Due May 20

CARRA is pleased to announce we are accepting applications for the next Registry Informatics Internship cycle. For this cycle, we are focusing the work of the internship on a CARRA initiative to facilitate and/or enhance registry data collection using technology, particularly EHR and other point-of-care systems.

The overarching goal of this new CARRA initiative is the planning and implementation of both short- and long-term strategies to streamline and reduce the burden of registry data entry and collection while maintaining all regulatory requirements necessary for post-marketing surveillance and other phases of FDA-regulated clinical trials.

CARRA will fund one internship position for up to two years. The internship start date is July 1, 2019. Applicants must be Board Eligible or Board Certified in Pediatric Rheumatology in North America as of this date. Eligible applicants must be CARRA members. Junior faculty and early investigators are encouraged to apply.

Click here to see the full RFA.


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.

Click here to see the full RFA.


Reminder: VERITY Pilot & Feasibility Research Award Due May 1

VERITY (Value and Evidence in Rheumatology using bioInformaTics, and advanced analYtics) is a NIAMS-funded P30 awarded to Brigham and Women’s Hospital. Within its first year of infancy, VERITY has gained momentum in the rheumatic and musculo-skeletal research world. Not only has it established three cores (Administrative, Bioinformatics and Methodology cores) and the VERITY/Brigham Course in Rheumatology Clinical Research under the P30, it has also launched the VERITY Pilot & Feasibility (P&F) Research Award. This award is a NIAMS-supported $20,000 grant that is aimed at providing seed funding for new projects as well as to offer an opportunity to the VERITY Research Community to develop skills in proposal preparation. All applicants must be a member of the VERITY research community and the selection committee will favor VERITY young investigators (rank of Assistant Professor or below) who have not been awarded an R01 grant or equivalent. The 2019 award application is due May 1, 2019 at 5:00PM ET. To learn more information on VERITY and the P&F Research Award, please visit http://www.verityresearch.org/.


CARRA Publications: Juvenile Localized Scleroderma Manuscript Published

We are excited to announce that a team of CARRA investigators led by CARRA Member Eveline Wu, MD, Assistant Professor of Pediatrics at UNC, recently published a manuscript based on the analysis of data from patients with juvenile localized scleroderma (jLS) from the CARRA Legacy Registry. The manuscript, entitled “Baseline Description of the Juvenile Localized Scleroderma Subgroup From the Childhood Arthritis and Rheumatology Research Alliance Legacy Registry, has been published in the April 2019 Issue of the ACR Open Rheumatology.  Dr. Wu and her team found that children with jLS that do not have joint limitation are referred to pediatric rheumatologists later than patients with joint limitation. The authors note that a delay between jLS symptom onset and the first visit with a visit with a pediatric rheumatologist is not uncommon, which highlights the insidious nature of the disease and need to educate referring providers about the symptoms of localized scleroderma.

A full list of all Member Publications can be found on the CARRA website.

Publications, presentations, abstracts, and other forms of presentation that result from the use of CARRA data or infrastructure must be submitted for review by the CARRA Publications Committee prior to distribution. Click here to read CARRA’s publication guidelines.

Any members who wish to have their publications added to this list or announced in the CARRA newsletter may contact Ashton Woll, CARRA Communications Manager, at [email protected].


CARRA Volunteer Judy Barlin Receives Lupus Foundation of America (LFA) Award

Lupus Foundation of America Board Chair Susan Manzi, MD, MPH; Foundation immediate past President & CEO Sandra C. Raymond; award recipient Judy Barlin

Those of you involved with the CARRA Lupus Committee know the incredible contributions to research made by Judy Barlin, whose son lost his life to lupus at the age of 24 several years ago.  Judy has been participating in CARRA workgroups and has been attending CARRA Meetings for many years.  Judy was recently recognized for her efforts in research and advocacy by being presented with the first annual Sandra C. Raymond Advocate of the Year by the Lupus Foundation of America (LFA).  Click here to read more about Judy Barlin and her well-deserved award. Thank you for all that you do for the LFA, for CARRA, and for the field of lupus research!

The Lupus Foundation of America offers funding opportunities to researchers and has resources for physicians and their patients. Click here to learn more about the Lupus Foundation’s resources.


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 and we encourage you to join one of our 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!

Kudos to Current Top Performing Teams & Individuals!

CARRA would like to extend a special thank you to all of our CARRA-affiliated Walk teams, and provide a special “shout-out” to our current top teams, team captains, and top fundraisers.

Top CARRA-Affiliated Teams (as of April 24, 2019)

  • Hackensack-Meridian Health Heroes at HUMC /$6065 (Orange, NJ; Team Captain: Doreen Tabussi)
  • CCMC Rheumatology Team/$2965 (Hartford, CT; Team Captain: Ann Mendicino-Wrynn)
  • JIA Walkers/$1,190 (Salt Lake City, Utah; Team Captain: Debbie Durkee)

Top Individual Fundraisers (as of April 24, 2019)

  • Yuki Kimura ($3,700)
  • Karly Green ($825)
  • Jennifer Weiss ($790)
  • Tegan Willard ($690)
  • Robert Garrett ($250)

Click here to view our top fundraising teams, and click here to view all of our top fundraisers.

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].

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


Registry Enrollment Update (as of 4/19/19)


Important Upcoming Dates


Arthritis Foundation Updates

The Safe Step Act

Last week, federal step therapy reform was introduced to the House of Representatives by Reps. Paul Ruiz (D-CA) and Brad Wenstrup (R-OH)!

Step therapy, sometimes known as "fail first," is a tool used by insurers that requires patients to try a drug, or drugs, that are preferred by the insurance company before they can access the therapy originally prescribed by their physician. Overly burdensome step therapy can jeopardize the patient-provider relationship and unnecessarily prolong ineffective treatment, preventing patients from immediately starting, or in some cases continuing, to access the most appropriate therapy recommended by their doctor.

A webinar was hosted to provide more information about the importance of federal Step Therapy Reform. View the slides here.

The reforms proposed in the legislation will make step therapy a more transparent process, that gives doctors the power to override step therapy decisions when medically appropriate, and that takes into account personal medical history.

Take action to support this important legislation today!

Thanks for all that you do!

Your Advocacy & Access Team
[email protected]

The Advocacy & Access Team