Lupus Foundation of America (LFA) Advocacy Generates Funding Opportunity for CARRA
CARRA is excited to announce that the U.S. Centers for Disease Control and Prevention (CDC) has awarded a three-year $2.4 million grant to the CARRA team of Principal Investigators including Aimee Hersh (University of Utah), Andrea Knight (SickKids, Toronto), Mary Beth Son (Boston Children’s Hospital), and Laura Schanberg (Duke), as well as Co-Investigator Emily von Scheven (UCSF). The grant will support CARRA and CARRA Registry sites enrolling and following lupus patients in the CARRA Registry and help determine the lifetime impact of lupus on children and teens who are living with the disease.
In this Issue...
Aimee Hersh, MD
Primary Children's Hospital
Andrea Knight, MD, MSCE
Hospital for Sick Children
Mary Beth Son, MD
Boston Children's Hospital
Laura Schanberg, MD
Duke Clinical Research Institute
Emily von Scheven, MD, MAS
UCSF Benioff Children's Hospital
“We are thrilled to receive this funding from the CDC that will further our mission of advancing meaningful research in pediatric lupus,” said Aimee Hersh, MD, Chair CARRA’s Lupus Research Committee. “This grant will utilize CARRA Registry data to determine sociodemographic and disease related drivers of disparities in outcomes for more than 1,000 pediatric lupus patients who will be followed in the CARRA Registry for at least 10 years.”
The Lupus Foundation of America (LFA) and lupus advocates nationwide played key roles in securing the funding that made the grant possible as they worked with Congress to increase funding for the lupus registry program at CDC, which is the source of the grant. The LFA also worked with Congress and CDC to recommend that the program increase its focus on childhood lupus.
“The funds to support this CDC grant to CARRA are a direct result of the tireless efforts of lupus warriors who participate in year-round Lupus Foundation of America advocacy initiatives,” said Stevan W. Gibson, Lupus Foundation of America president and CEO. “Within the past five years alone, Foundation-led advocacy efforts have generated a half-billion dollars for lupus research. We want to thank Senator Richard Shelby (AL) and Senator Richard Durbin (IL) for their support in the U.S. Senate for this important achievement. We also want to thank last year’s co-chairs of the Congressional Lupus Caucus, Reps. Tom Rooney (FL, since retired), Ileana Ros-Lehtinen (FL, since retired), Bill Keating (MA), and Eddie Bernice Johnson (TX), who were instrumental in generating support among their colleagues for this important childhood lupus research initiative.”
Thousands of children and teens in the U.S. are living with lupus. In children, lupus tends to be more aggressive and severe than it is in adults. The symptoms are more intense, and the disease can have long-term effects on a child’s growth, quality of life, and even how long they live.
The LFA recognized these challenges and in 2006 established the first and only national childhood lupus research program, the Michael Jon Barlin Pediatric Lupus Research Program. In 2017, the Foundation started a partnership with CARRA to bring together advocacy for and research on childhood lupus. “The Lupus Foundation of America recognizes the significance of childhood onset lupus and we are pleased to continue to work with them to advance the treatment and health outcomes of children living with lupus,” said Emily von Scheven, MD, CARRA Vice President.
CARRA is very grateful for the LFA’s partnership and advocacy efforts that made this grant possible. Click here to learn more about the LFA’s efforts to address lupus in children and teens.
This late-breaking RFA is intended to support the development and implementation of a clinical or translational project capable of advancing knowledge applicable to multiple pediatric rheumatic diseases. Examples of transdisciplinary areas of study appropriate for this grant mechanism include, but are not limited to, mental health, reproductive health, implementation science, cardiovascular health, transition, and telemedicine/informatics. Applications comprising multidisciplinary, multi-specialty, and/or multi-organization collaborations are particularly encouraged. Click for more information.
Grant applicants that intend to utilize the CARRA Registry or CARRA-related data and/or samples (including Legacy Registry and APPLE data/samples) must receive approval from the CARRA Data Sample Share Committee (DSSC) prior to submitting their grant applications. If you are submitting a grant application that involves CARRA data and have not already submitted your DSSC application, your application may not be accepted. If you have any questions regarding this requirement, email [email protected].
In addition, if your application will propose collection of any new data or biosamples via the CARRA Registry and/or via CARRA sites, you must include a letter of support (LOS) from CARRA's Research and Registry Oversight Committee (RROC). Email [email protected] with a brief summary of your proposal and CARRA will work to schedule a call with you to discuss your application as soon as possible.
CARRA members, leaders and staff were out in full force this summer, participating in the Arthritis Foundation’s JA Conferences in Houston, TX in late July and in Minneapolis, MN in early August. The Arthritis Foundation has been holding national Juvenile Arthritis Conferences for more than 30 years! The four-day educational conference focuses on health, wellness and fun for families and children affected by juvenile arthritis and related childhood rheumatic diseases.
In Houston, CARRA Treasurer Bob Colbert participated in an indoor “fireside chat” with parent partner, Corrine Pinter and the Arthritis Foundation’s Guy Eakin, discussing the many ways patients and families can and should engage in research. In Minnesota, CARRA Vice President, Emily von Scheven participated in a similar session with adult JIA patient Deb Constien. CARRA’s Jim Jarvis was a key note speaker at both events, while Amanda Brown, Danielle Bullock, Peter Chira, Colleen Correll, Baruch Goldberg, Marietta De Guzman, Cuoghi Edens, Suhas Ganguli, Eyal Muscal, Amir Orandi, Maria Pereira, Mona Riskalla, Rich Vehe, Tiphanie Vogel, gave talks and participated in presentations on JIA, lupus, dermatomyositis, scleroderma, spondyloarthropathies, eye disease, rare diseases, transition and more! A special thank you to CARRA’s Peter Chira, for serving as our CARRA representative on the JAC planning team and being such an integral part of both events! Executive Director, Kelly Mieszkalski, and Director of Strategic Partnerships and Patient Engagement Vincent Del Gaizo engaged with attendees throughout the conference at the CARRA exhibit table, sharing information about how the Arthritis Foundation-CARRA partnership is making an impact on pediatric rheumatology research and the lives of those affected by JIA and other pediatric rheumatic diseases.
Meeting attendees were able to participate in a variety of CARRA-related research opportunities, including taking an online survey available through the conference meeting app, signing up to be part of PARTNERS, and participating in focus groups related to research funded by a CARRA-Arthritis Foundation grant. If you are a CARRA member interested in conducting research at next year’s JA Conference in Orlando from July 23-26, 2020, please be on the lookout for more information soon!
A highlight of both meetings was the presentation of the Arthritis Foundation’s presentation of the Earl Brewer award for Physician Leadership to CARRA’s very own Rich Vehe, from the University of Minnesota. We are so grateful for Rich’s commitment and service to both the Arthritis Foundation and to CARRA.
Baylor’s CARRA Registry team members Anaid Reyes, Dr. Marietta De Guzman and Monica Guevara visit the CARRA table at the Houston JA Conference
Bob Colbert, Corrine Pinter, Guy Eakin
Kelly Mieszkalski & Vincent Del Gaizo
JA Warrior Paige Goehner gives kudos to doctor and fellow award winner, Rich Vehe, MD
Click here to see more photos from the events! Read more about the Arthritis Foundation’s JA Conferences.
The CARRA Elections Committee seeks nominations for the following CARRA leadership positions:
Steering Committee Positions:
1Position receives 20% salary support
2Position receives 10% salary support
3Position receives 5% salary support
TWO SEPARATE ELECTIONS
The elections for the Steering Committee Chair open positions and the Finance Chair will be held prior to the elections for the Steering Committee Vice Chair open positions.
|Chair Elections & Finance Chair Election||Vice Chair Elections|
|Nominations Due (by 8pm ET)||October 7||December 20|
|Nominee Applications Due (by 8pm ET)||October 18||January 10|
|Voting Opens||October 25||January 17|
|Voting Closes||November 4||January 27|
|Elected candidates announced to the membership||November 8||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.
VERITY (Value and Evidence in Rheumatology using bioInformaTics, and advanced analYtics) is a NIAMS-funded P30 research program awarded to Brigham and Women’s Hospital. The next VERITY course will be Tuesday, May 12, 2020 to Friday, May 15, 2020, in Boston, MA. The course is aimed at clinical investigators pursuing rheumatic disease epidemiologic and patient-oriented research. Course attendees will consist of early-stage (typically residents, fellows, or junior faculty) investigators pursuing clinical/patient-oriented/epidemiologic research studies in rheumatic and musculoskeletal diseases. Attendees will develop or refine a research protocol or specific aims for a grant proposal during the course. Tuition is free but travel and lodging should be funded by the applicant’s program.
Through a partnership with Brigham and Women’s Hospital and Harvard Medical School, CARRA is able to select one member to receive travel support and participate in the VERITY/Brigham Course in Rheumatology Clinical Research in Boston, MA at Brigham and Women’s Hospital.
The chosen applicant will have their hotel paid for directly by the course organizers and reimbursement of travel expenses to participate in the 6 day course. Course organizers will coordinate travel arrangements with the chosen applicant. Funding for this travel support is provided by NIAMS.
To be eligible for this travel award you must have renewed your CARRA membership for 2019 and meet the VERITY/Brigham Course in Clinical Research eligibility guidelines:
Submit your VERITY application online by December 6, 2019.
*This form confirms that you have completed the VERITY application process and authorize CARRA to receive your application materials from the course administrators for review and selection of the CARRA member to receive the open spot.
The course is directed by Dr. Jeffrey Sparks and Dr. Daniel Solomon of Brigham and Women’s Hospital. To learn more about the 2020 VERITY course, including application materials, deadlines, please visit www.verityresearch.org or email [email protected].
As of September 13, CARRA has enrolled 9,286 patients in the CARRA Registry, including:
Other highlights include:
Thank you to all of our CARRA Registry sites for all of your hard work!
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!
Congratulations to the newly elected members of CARRA’s Election Committee. Thank you to your service to CARRA. We would also like to thank all of the candidates who participated in this election and everyone who voted!
Deborah Levy, MD
University of Toronto - The Hospital for Sick Children
Kabita Nanda, MD
Seattle Children's Hospital
Nancy Pan, MD
Hospital for Special Surgery
Sangeeta Sule, MD, PhD
Children’s National Health System
The Arthritis Foundation has been hosting the National JA Conference in two locations for the past 4 years. In 2020, we will be hosting the conference in one location and having a Family Reunion. This format will give families from across the country an opportunity to meet up again with friends they have met at previous conferences. Next year, the conference will be held in Orlando, FL from July 23 – 26, 2020. Registration and Travel Award applications will open January 2020. In 2021, we will resume hosting our conference in two locations across the country. Those dates and locations will be announced mid-2020.
The new school year means a fresh start – and new challenges for children and teens with JA. Two JA moms with many years of school experience, both as parents and as professionals, will be sharing their tips and insights and answering your questions about how to make this school year a success.
A Special Online Event
Limited Time: 5 Days Only. Don’t miss out!
Starting Monday, September 23 through Friday, September 27