Arthritis Foundation and CARRA Dedicate $1.2M to Address Research Gaps in Pediatric Rheumatology

By Vandana Suresh | July 20, 2023 — For children with rheumatic disorders, navigating everyday activities is a constant challenge. To push back against these debilitating diseases, the Arthritis Foundation has partnered with the Childhood Arthritis and Rheumatology Research Alliance (CARRA) to fund investigators across North America who will address specific research gaps in juvenile arthritis and other childhood rheumatic diseases.

The 10 grants, amounting to almost $1.2 million, will enable investigators to probe into topics from developing strategies to improve pediatric rheumatology care provided by adult rheumatologists to understanding patterns for tapering off arthritis medications in children.

“The Arthritis Foundation and CARRA partnership was forged to improve the lives of children with rheumatic diseases,” said Steven Taylor, President and CEO of the Arthritis Foundation. "We are proud to support clinical, translational and observational studies that will address many of the unmet clinical needs in pediatric rheumatology."

Pediatric rheumatic diseases are a collection of musculoskeletal, connective tissue and arthritic disorders. Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease, followed by other conditions such as lupus, dermatomyositis, vasculitis and scleroderma. The Arthritis Foundation estimates that there are nearly 300,000 children and teens with arthritis in the United States alone. Hence, delivering quality care to children and youth with rheumatic disease is an essential and urgent clinical need.

“Through our strong partnership with the Arthritis Foundation, we are able to fund a number of grants this year that will advance not only the research that will have a positive and lasting impact on children with arthritis and rheumatic diseases but also support the careers of numerous early investigators,” said Robert Colbert, MD, PhD, CARRA President.

One of the CARRA-Arthritis Foundation awards will help Sarah Bayefsky, MD, an adult and pediatric rheumatology fellow at Children’s Hospital of Philadelphia, to investigate the barriers facing adult rheumatologists who care for children. To generate a comprehensive understanding of these challenges, she will speak directly to both families of pediatric patients who receive care from adult rheumatologists and adult rheumatologists who provide treatment.

Even with adequate care, living with pain limits how much a child with JIA participates in school, impacting their employment into adulthood. With her award, Mia Chandler, MD, MPH, a pediatric rheumatology fellow at Boston Children’s Hospital, will study the impact of disease-related and non-disease-related factors on school participation. Results from her project will form the basis for future interventions to mitigate the adverse effects of JIA on educational outcomes and maximize educational participation.

“One of the greatest impacts of the CARRA-Arthritis Foundation grants program is supporting early career pediatric rheumatologists. These awards provide a critical boost to help launch the careers of physician-scientists focused on pediatric rheumatic conditions,” said Kristen Mueller, Vice President of Autoimmune Arthritis Research at the Arthritis Foundation.

Although the likelihood of remission depends on several factors, studies indicate that 7% of children with JIA can achieve remission within the first year and a half after diagnosis. However, a break from their medications, particularly biologics, could cause their symptoms to rebound. CARRA-Arthritis Foundation award recipient Daniel Horton, MD, MSCE, pediatric rheumatologist at Rutgers Institute for Health, will analyze data from the CARRA Registry to understand patterns by which children and youth with well-controlled juvenile arthritis can taper or stop adalimumab.

“The CARRA-Arthritis Foundation grants program is a true showcase of the power of collaboration and exemplifies a true aligned scientific purpose. Together we will drive pediatric rheumatology research further – faster,” said Mathieu Nelessen, CARRA CEO.

 

2023 CARRA-Arthritis Foundation Research Grant Awardees
 

1.     Sarah Bayefsky, MD, The Children’s Hospital of Philadelphia

CARRA- Arthritis Foundation Fellow Grant

Exploring the Care Provided by Adult Rheumatologists to Pediatric Patients: A Qualitative Study

 

2.     Mia Chandler, MD, MPH, Boston Children’s Hospital

CARRA- Arthritis Career Development Award

Juvenile Idiopathic Arthritis and School-Related Concerns

 

3.     Matthew Eremita, MD, The Feinstein Institutes for Medical Research

CARRA- Arthritis Foundation Fellow Grant

IL-10 inhibits TLR-9-induced T cell receptor-mediated T cell activation in Macrophage Activation Syndrome

 

4.     Daniel Horton, MD MSCE, Rutgers, The State University of New Jersey

CARRA- Arthritis Foundation Small Grant

Withdrawal of AdaliMumab: Strategies and Outcomes in the CARRA Registry (WAM-SOCCR)

 

5.     Marci Macaraeg, MD, Cincinnati Children's Hospital Medical Center

CARRA- Arthritis Foundation Fellow Grant

Defining and endotyping syndrome of undifferentiated recurrent fevers

 

6.     Kimberly Morishita, MD, MHSc, British Columbia Children’s Hospital

David Cabral, MBBS, FRCPC, British Columbia Children’s Hospital

Vidya Sivaraman, MD, The Research Institute at Nationwide Children's Hospital

Linda Wagner-Weiner, MD, University of Chicago

CARRA- Arthritis Foundation Small Grant

Evaluating outcomes and predictors of outcome in pediatric ANCA-associated vasculitis

 

7.     Jessica Perfetto, MD, The Children’s Hospital at Montefiore

CARRA- Arthritis Foundation Fellow Grant

Comparison of disease severity and outcomes between African and North American patients with juvenile dermatomyositis

 

8.     Jordan Roberts, MD, MPH, Seattle Children's Hospital

CARRA- Arthritis Career Development Award

Leveraging Linkage of the CARRA Registry to Identify Serious Infections Among Children with Lupus

 

9.     Jennifer Weiss, MD, Hackensack University Medical Center

CARRA- Arthritis Foundation Large Grant

Initial Validation of the Pain and Symptom Assessment Tool in Juvenile Fibromyalgia Syndrome

 

10.  Sheetal Vora, MD, MS, Wake Forest University School of Medicine

Emily Vara, DO, Medical University of South Carolina

Kelly Rouster-Stevens, MD, Emory University

CARRA- Arthritis Foundation Implementation Science Testing Grant

Implementing a Change Package for Depression Screening and Appropriate Response for Children with Rheumatic Disease

###
 

About the Arthritis Foundation:

The Arthritis Foundation is fighting for all people who live with arthritis. As a Champion of Yes, it's the Arthritis Foundation's mission to turn the obstacles arthritis causes into opportunities. The Arthritis Foundation champions life-changing solutions and medical advancements, and it also provides ways for people to connect, break down barriers in health care and join the fight for a cure — uniting hearts, minds and resources to change the future of arthritis. To join the fight to cure arthritis, visit arthritis.org.

About Childhood Arthritis and Rheumatology Research Alliance (CARRA):

Formed in 2002, CARRA’s mission is to conduct collaborative research to prevent, treat, and cure pediatric rheumatic diseases. CARRA is a 501(c)3 registered non-profit organization. For more information, please visit carragroup.org.