Category Archives: Research

juvenile idiopathic arthritis pfdd announcement

PARTNERS Pediatric Learning Health System: New JIA Project Focuses on Improving Outcomes for Children

The Patients, Advocates, and Rheumatology Teams Network for Research and Service (PARTNERS) consortium was selected to receive a 2-year grant to implement a Pediatric rheumatology Learning Health System (LHS) that will work with networks in the Patient-Centered Outcomes Research Institute (PCORI) PCORnet Learning Healthcare System Collaborative.

The PARTNERS Pediatric LHS will provide support for patients with juvenile idiopathic arthritis (JIA) and their families to actively engage in care and self-management activities. JIA is a rare disease, making it difficult to study. Currently there is no cure for JIA. Recent advances in drug development have resulted in many therapies, including biologics. However, there remain many unanswered questions about how to use available therapies. While early diagnosis and initiation of treatment have proven to improve outcomes, variation exists in treatment patterns across providers, medical centers, and geographic locations.

Continue reading PARTNERS Pediatric Learning Health System: New JIA Project Focuses on Improving Outcomes for Children

arthritis clinical trials

Arthritis-Specific Clinical Trials, at Your Fingertips

Clinical trials are an important step in testing the effects of new treatments on health outcomes. Did you know that one of the most challenging aspects of the drug approval process is finding people to take part in clinical trial studies? It’s true, and we believe one of those reasons is because patients don’t know what is available to them. That’s why we’ve created an easy-to-use search tool– the Arthritis Trial Finder – so you can easily find clinical trials that meet your needs!

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rheumatology funding

Closing the Gap on the Nation’s Rheumatologist Shortage

Many of us know that access to care isn’t always a guarantee. All too often, seeing a rheumatologist includes traveling out of state because of the severe rheumatologist shortage. Last year we committed to closing this gap by offering Fellowship grants to universities in underserved areas. After careful consideration, we recently selected five schools to receive fellowship grants to help doctors advance in this specialty field. The institutions were offered $150,000 to launch new slots for established fellowship programs.

We are thrilled to be able to offer these awards because of the impact the newly funded positions will have on their communities. Executive Director Kelsey Woods told us this of the grant given to a school in her area, “The University of Washington has long been a partner of the Arthritis Foundation in the fight to both control and cure this debilitating disease. We are so proud to continue to fund a rheumatology fellowship right here in Seattle at the UW. Healthcare access is and must continue to be a top priority in the region, and this investment is confirmation that we will continue to fight for that.”

Three adult and two pediatric rheumatology fellowships have been offered and accepted by the follow programs:

Continue reading Closing the Gap on the Nation’s Rheumatologist Shortage

carra grants 2018

Spring 2018 Childhood Research Grants Announced

We recently gave approximately $160,000 toward childhood arthritis research in the form of research grants. The grants are funded through the Childhood Arthritis and Rheumatology Research Alliance (CARRA); small grants were given to pediatric rheumatologists and fellows small grant research awards were given to third year fellowship students.

Continue reading Spring 2018 Childhood Research Grants Announced

dr christian lattermann

Researchers on the Path to a Cure – Spotlight on Dr. Christian Lattermann

Osteoarthritis Center of Excellence Research Story

Over the last month, we’ve kept you updated on the work being done by the researchers in our osteoarthritis (OA) center of excellence (OA COE). The COE is currently funding three Clinical Trial Network demonstration studies that may lead to better diagnosis and earlier treatments for arthritis. Researchers from six different institutions will collaborate in various aspects of these cutting-edge studies. This is the last in a series of three blogs describing these studies.

Most people with partial or complete rupture of the anterior cruciate ligament (ACL) develop post traumatic OA (PTOA) within 10 to 20 years after their injury. Unfortunately, current ACL injury treatment options (both surgical and non-surgical) are successful in the short-term but do little or nothing to reduce the risk of developing PTOA later.

All three of the current OA COE are demonstration projects that build on knowledge gained from earlier foundation-funded ACL and PTOA research.

Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Christian Lattermann

dr virginia byers kraus osteoarthritis research

Researchers on the Path to a Cure – Spotlight on Dr. Virginia Byers Kraus

Osteoarthritis Center of Excellence Research Story

Our osteoarthritis (OA) center of excellence (COE) is currently funding three Clinical Trial Network demonstration studies that may lead to better diagnosis and earlier treatments for OA. Researchers from six different institutions will collaborate in various aspects of these cutting-edge studies. The three studies are connected to one another for a common purpose and they build on previous research funded by the Arthritis Foundation. This is the second in a series of three blogs describing these studies. Read the first one here.

Dr. Virginia Byers Kraus is working to identify biochemical biomarkers found in synovial (joint) fluid and urine from post-traumatic OA patients who have suffered anterior cruciate ligament (ACL) rupture. The samples used for this study come from samples collected from a 2013 Arthritis Foundation-funded project that validated using magnetic resonance imaging (MRI) techniques to measure the molecular changes that begin to occur in joints immediately after an ACL tear.

Urine and synovial fluid (from damaged knee joints) were collected from patients at five timepoints: baseline (less than 4 weeks after the joint injury), during surgery (about 6 weeks after the injury), 6 weeks after surgery, 6 months after surgery, and 1 year after surgery. The analysis of the 177 urine samples and 101 synovial fluid samples will take about 6 months.

The goal of this project is to evaluate which biochemical markers are connected to inflammation and cartilage breakdown following ACL rupture. The team is working to identify which biomarkers are most critical for predicting risk of OA after injury and to confirm the earliest and best timepoints to start treatments.

“With heart attacks, we treat immediately for best results,” explained Dr. Kraus. “We’re hoping to show that the same is true for joint injuries. What is important is the time from the injury to medical intervention. We must treat early to prevent further damage. What we currently see is that about half of the patients who have surgery for an ACL tear eventually develop more serious disease.”

By identifying biomarkers that appear early following an injury and by using more sensitive MRI imaging techniques, researchers hope to identify the individuals at highest risk for more serious joint disease and to determine the “window of opportunity” for providing treatment to prevent subsequent OA. Earlier interventions might include new drugs designed to halt the disease process and other anti-inflammatory drugs, thus reducing the need for joint replacements later and improving the quality of life.

Dr. Kraus was inspired to study OA by her father. Her father, a surgeon during the Vietnam War, damaged his hip and as a result endured 3 hip replacements over the rest of his life. While her father continued working into his 70’s, Dr. Kraus felt frustrated watching his daily suffering and the suffering of her clinic patients. It’s pushed her to want to make a difference and stop OA in its tracks.

“Osteoarthritis is a big and challenging beast -it’s the most prevalent disease in the world,” she explained. “It affects mobility, which in turn affects your heart and many other aspects of your health. We’ve begun to see success in understanding many types of arthritis, but up to now, we haven’t been as successful with OA. It’s so frustrating for me to see the suffering caused by this disease.”

We’re so proud to call Dr. Kraus a Champion of Yes.  She explained why she likes to submit her research projects to us: “The Arthritis Foundation has stayed the course in maintaining prolonged interest in finding a cure. It has worked at building on prior innovative research – it’s hard to get funding for these types of studies. The Foundation has created a nimble mechanism for doing this type of research and moving it forward faster. This brings us closer to finding cures for patients more quickly.”

Dr. Kraus, the principal investigator in this project, is a professor of Medicine, Pathology and Orthopaedic Surgery at Duke University in Durham, NC. She will be working with other researchers from Duke University, as well as researchers from the University of California San Francisco (UCSF), Hospital for Special Surgery (HSS) in NYC, and the Mayo Clinic in Rochester, MN.

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Researchers on the Path to a Cure – Spotlight on Dr. Xiaojuan Li

Osteoarthritis (OA) affects over 30 million people and is the most common cause of disability in adults in the U.S. The Arthritis Foundation has set the goal of advancing OA treatments as one of its highest priorities, making it one of the Foundation’s four scientific initiatives. To do this, we have created the OA Center of Excellence (COE), where researchers from around the county can join the Clinical Trial Network to work together to accelerate the development of new OA therapies.

The OA COE is currently funding three Clinical Trial Network demonstration studies that may lead to better diagnosis and earlier treatments. Researchers from six different institutions will collaborate in various aspects of these cutting-edge studies. We will look at each of these studies in a series of blogs.

Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Xiaojuan Li

rheumatologist shortage

Growing Shortage of Rheumatologists “Very Concerning”

New research predicts that the existing shortage of rheumatologists will worsen over the next decade, while the demand for arthritis specialists will continue to grow.

“In 10 years, we will have a significant challenge in America to take care of the demands of rheumatology care. Every region in the U.S. will be negatively affected by [having] far less rheumatologists than we think will be optimal,” says Daniel F. Battafarano, DO, division director, Rheumatology Service, San Antonio Military Medical Center in Texas.

Continue reading Growing Shortage of Rheumatologists “Very Concerning”

RLHS pilot program

Enhancing Communication Between Patients and Health Care Teams

Enhancing Communication Between Patients and Health Care Teams
Pilot Network to Launch Soon

The Arthritis Foundation is currently supporting the development and rollout of four specific scientific initiatives. These breakthrough initiatives are shaping the way new arthritis treatments are developed and will strengthen the relationship between you, your health care team.  One of these initiatives is dubbed “Collaborating With Patients for Better Health” and the central component to this project is the Rheumatology Learning Health System.

What is the Rheumatology Learning Health System (RLHS)? The RLHS is a process that builds better bridges of communication between doctors and their patients to improve health outcomes by providing a wholistic picture of a patient’s condition – from not only clinic visit data, but also data entered by patients in between clinic visits and complemented by available research data. It is the central piece of our Collaborating with Patients for Better Health science initiative. The RLHS will be enabled by a shared electronic platform that will provide the means for this patient-provider produced health record. The complexity of the project requires that it be tested at a small number of sites to ensure that it works as planned. It will allow for new ideas and concepts to be “incubated” and tested thoroughly before growing the RLHS.

This proof of concept pilot network project will test the RLHS at six sites – three pediatric and three adult sites. So far, three pediatric sites have been selected for this project: Hackensack Meridian Health in New Jersey, Stanford Health Care in California, and Wake Forest Baptist Health -Brenner Children’s Hospital in North Carolina. The adult patient sites will be selected soon. The pilot project will span two years (from February 2018 to February 2020).

The RLHS will securely house information from 3 different sources that will be available to participants through patient and health care provider coproduced dashboards:

  • Electronic patient health records maintained at individual medical practices: This contains information obtained during a medical visit, prescription information, and any patient test results ordered by a doctor
  • Information entered by patients themselves between visits with their doctors: These are known as patient reported outcomes, and includes information about general health, how a patient is feeling, how many joints are inflamed or painful, or side effects from medications
  • Existing arthritis patient registries: Databases of patient health information typically used for research

RLHS design features will include patient and health care provider decision support and shared decision-making tools, as well as features to support patient self-management.

The RLHS is being created through collaboration between the Arthritis Foundation, the Childhood Arthritis and Rheumatology Research Alliance (CARRA), the Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN), Understanding Childhood Arthritis Network – Canadian/Dutch Collaboration (UCAN, CAN-DU), and the Dartmouth Institute for Health Policy & Clinical Practice.  Each participating organization has contributed to the co-design of this system and guides its path forward.

Related Resources:

carra grants 2018

CARRA – Arthritis Foundation Grant Awardees Announced

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) recently announced award recipients for the CARRA-Arthritis Foundation 2018 large and small grant awards. Grants are awarded to investigators with projects that positively impact the pediatric rheumatology scientific community. Funded by the Arthritis Foundation, a total of almost $240,000 was awarded for this year’s grants. Alpha Omicron Pi Foundation (AOII), a funding partner, funded three of the grants noted below.

“These grants are important because of the rarity of these patients, “explained Guy Eakin, PhD, senior vice president of Scientific Strategy. “Research on rare conditions is difficult, and required broad networks like the partnership between the Arthritis Foundation and CARRA to launch great ideas, then turn them into active research programs. We’re very proud to work in partnership with CARRA to see these and other major scientific initiatives moving forward.”

Of the 9 grants awarded, 5 are related to systemic lupus erythematosus (SLE) studies, 3 are related to juvenile idiopathic arthritis (JIA) studies, and 1 looks at tracking localized disease with mobile apps.


Two applications were selected to receive $50,000 awards:

  • Kiana Johnson, East Tennessee State University: Healthcare Transition Readiness and Health Self-management among youth with Juvenile Systemic Lupus (funded by AOII)
  • Kathleen O’Neil, Indiana University School of Medicine: The Relationship Between Changes in Adipokine Levels and Disease Activity in Pubertal Children with SLE


Seven new small grants of up to $25k each were awarded. Congratulations to:

  • Fatima Barbar-Smiley, Nationwide Children’s Hospital: Immunogenicity of pneumococcal vaccination and impact on nasopharyngeal pneumococcus colonization in patients with childhood onset systemic lupus erythematosus
  • Ingrid Goh, The Hospital for Sick Children: Patient and Caregiver Engagement in Research (PACER): Approaching for research on date of rheumatic diagnosis—a pilot project (funded by AOII)
  • Joyce Hui-Yuen, Cohen Children’s Medical Center: Feasibility of Conducting Epigenetic Analysis in Pediatric Lupus B Cells
  • Suzanne Li, Hackensack University Medical Center: Tracking Disease Activity in Juvenile Localized Scleroderma with a Mobile App (funded by AOII)
  • Melissa Oliver, Indiana University, Riley Hospital for Children: Clinical disease manifestations associated with anti-TNF non-response in Juvenile Spondyloarthropathy
  • Victoria Werth, The University of Pennsylvania: Evaluation of the reliability and validity of the Cutaneous Lupus Erythematosus Disease Area and Severity Index (CLASI) in pediatrics
  • Leandra Woolnough, Texas Scottish Rite Hospital for Children: Longitudinal Musculoskeletal Ultrasound Assessment in Juvenile Idiopathic Arthritis

 CARRA will continue with the large grants program in 2019. The deadline for the next round of large grants will be March 1, 2019. Visit the CARRA website for details on other funding opportunities.