Category Archives: Research

Developing the Rheumatology Learning Health System – A Patient’s Story

A big part of our Collaborating With Patients for Better Health scientific initiative has been creating the Rheumatology Learning Health System (RLHS) in collaboration with major partners. The goal of RLHS is to improve quality of care by enhancing communication between patients and their doctors through electronic dashboards.

These dashboards support meaningful conversations and shared decisions about care and treatment plans. They include patient-reported outcomes (PROs), enabling patients to list questions and concerns in advance of a clinical visit. Patients and doctors can turn on/off different data elements to focus on the most meaningful data.

During the pilot phase of this project, the group created and tested paper-based versions of the dashboard at three pediatric sites. In the next phase, electronic versions of the dashboards are being created, and adult sites are being added. Jennifer is helping us make this project successful.

Jennifer is a member of the Dartmouth-Hitchcock Adult Pilot Site Team. She was diagnosed with rheumatoid arthritis (RA) 10 years ago. While being treated with methotrexate, she started experiencing flares. Her doctor prescribed a short course of prednisone.

Reviewing the RLHS dashboard (like the one below) with her doctor helped them both see the visual of her joint count increasing in her RAPID3 scores. This led to her trying a new medication. Seeing Jennifer’s data at a point-in-time, and then over time, helped her and her doctor see how her RA disease activity needed a different treatment approach.

Jennifer says, “In the past, when thinking about a change in therapy, I’ve had some hesitation. It involves weighing how well I’m currently doing against things like possible side effects. What impact will the new medication have? Will I feel better? And equally important, what’s the added cost of a new medication?”

The dashboard helps focus conversations between patients and doctors. Asking patients like Jennifer the “Why” behind the reluctance or hesitation about changing medications invites a conversation about patient preferences and whatever extra help they may need.

“We’re trying to improve patient care by helping patients and doctors prepare for office visits, working together as a team, and improving communication between visits,” explains Arthritis

Foundation Senior Vice President Guy Eakin, PhD. “This is a difficult experiment, and exactly the type of challenge we’re proud to be working with patients and professionals to accomplish. We are thankful for the generosity of our donors for making this project possible.”

The Arthritis Foundation is working with the following partner organizations: 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 American College of Rheumatology (ACR). The Dartmouth Institute for Health Policy & Clinical Practice facilitates the group by providing strategic oversight and support for the RLHS.

JAC Research Sessions

Kids, teens, young adults and their families from across the country are landing in Minneapolis for the second of two National Juvenile Arthritis (JA) Conferences the Arthritis Foundation is hosting this year. This week’s conference offers a variety of events and informational program tracks focused on education and connecting with others, including two research sessions that will take place on Friday, August 2. Continue reading JAC Research Sessions

What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report

Arthritis patients have spoken: “We want safer, more effective, easier-to-use and less-painful-to-administer treatments that are less likely to cause potential long-term side effects. We need solutions to the challenges of dealing with comorbidities and multiple treatment changes.” Continue reading What’s Important to Juvenile Idiopathic Arthritis (JIA) Families: the JIA Voice of the Patient Report

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

Last year we introduced you to Dr. Xiaojuan Li and her Osteoarthritis (OA) Center of Excellence demonstration research project. The project, “Multi-site Multi-Vendor Cross-validation of Cartilage T1rho and T2 imaging”, was completed by investigators from four sites: the Cleveland Clinic Foundation (CCF) in Ohio; the University of California, San Francisco; the University of Kentucky; and the Montefiore Hospital and Albert Einstein College of Medicine in New York. They worked to quantify biomarker assessments in cartilage images obtained through magnetic resonance imaging (MRI). Continue reading Researchers on the Path to a Cure – Spotlight on Dr. Xiaojuan Li

Our Rheumatology Learning Health System Is Starting to Attract Attention!

A big part of our Collaborating With Patients for Better Health scientific initiative has been development of the Rheumatology Learning Health System (RLHS) in collaboration with some of our major partners. The goal of RLHS is to improve quality of care for pediatric and adult arthritis patients.
Continue reading Our Rheumatology Learning Health System Is Starting to Attract Attention!

FDA Approves New Bone-Building Drug for Osteoporosis

The Food and Drug Administration (FDA) recently approved romosozumab (Evenity), a new drug for osteoporosis. Unlike osteoporosis medicines called bisphosphonates, romosozumab doesn’t just stop bone loss; it also helps build new bone. It’s approved for postmenopausal women who have fractures, are at very high risk for fractures or haven’t responded to other treatments. The drug comes with an FDA warning for an increased risk of heart attack, stroke and cardiovascular death. Continue reading FDA Approves New Bone-Building Drug for Osteoporosis

Improving Mental Health for Kids With Juvenile Arthritis

Dr. Andrea Knight, lead investigator, will present “Engaging Patients and Parents to Improve Mental Health for Youth With Rheumatologic Disease” at the 13th International Congress on Systemic Lupus Erythematosus in San Francisco, April 5-8. The results of this study will also appear in the April 2019 issue of Lupus Science & Medicine. Continue reading Improving Mental Health for Kids With Juvenile Arthritis

rheumatoid arthritis research

ELMO1 – More Than Just Your Friendly, Red Sesame Street Character!

Dr. Sanja Arandjelovic has been studying inflammation and arthritis for a while – specifically, how a gene called ELMO1 is related to arthritis symptoms in mice. In 2010, the Arthritis Foundation awarded Dr. Arandjelovic the Philip S. Maaram Esq. Research (Planned Giving) 3-year grant for a project that studied cell enzymes related to joint inflammation in rheumatoid arthritis (RA) in mice.

During this study, Dr. Arandjelovic worked with Dr. Kodi Ravichandran and his research team at the University of Virginia on a related project, examining the process of joint inflammation in RA. Their work may provide clues to why the pain flare-ups associated with RA occur – and lead to new treatments.

Continue reading ELMO1 – More Than Just Your Friendly, Red Sesame Street Character!

Meet Nikita Goswami, Jane Wyman Foundation-sponsored Pediatric Fellow

Meet Nikita Goswami, Jane Wyman Foundation-sponsored Pediatric Fellow

Because access to care is not always guaranteed, the Arthritis Foundation has been working to help close the gap on the nation’s rheumatologist shortage through our fellowship initiative. We recently funded a new fellowship at Children’s Hospital Los Angeles (CHLA) through generous donations from the Jane Wyman Trust.

“I am grateful for this opportunity,” says Dr. Nikita Goswami, who was awarded the fellowship. “It will let me provide care to a large, diverse group of children with complex rheumatic conditions and to participate in clinical research to improve the diagnosis and treatment of childhood rheumatic diseases. Keeping the patient’s best interest in mind, I will continue to advocate on behalf of children with these diseases for access to cutting-edge, specialized medical care.”

Dr. Goswami earned her bachelor’s degree from Youngstown State University in Ohio, a medical degree from Ross University School of Medicine in Portsmouth, Dominica, and she completed a pediatric residency at Virginia Tech Carilion School of Medicine in Roanoke, Virginia. Dr. Goswami is in her second year of a pediatric rheumatology fellowship program at CHLA. The Jane Wyman Trust award will help her complete her last two years of study.

Continue reading Meet Nikita Goswami, Jane Wyman Foundation-sponsored Pediatric Fellow

2019 Arthritis by the Numbers – Did You Know?

It’s a fact that more than 54 million Americans have some form of doctor-diagnosed arthritis. But it’s estimated that almost twice that number may suffer from the disease – when you include those who have symptoms consistent with arthritis but haven’t been diagnosed.

We are proud to present the third annual edition of Arthritis by the Numbers!

2017: We started publishing Arthritis by the Numbers in March three years ago as part of the 2017 Advocacy Summit. That year, we collected over 200 facts about eight of the more than 100 forms of arthritis and rheumatic diseases. Additionally, the advocacy team contributed over 50 pages of individual state facts in the appendix.

Did you know?

  • Doctor-diagnosed arthritis affects about 1 in 4 adults.
  • About 1 in 3 military veterans in the U.S. lives with arthritis.
  • Gender, ethnicity, education, income level, social support and body mass can affect the chances of developing different types of arthritis – and its severity.

2018: In the second edition, we included more than 300 new and updated facts about 12 of the most common forms of arthritis and rheumatic diseases. We featured facts about two additional juvenile arthritis forms and two new adult arthritis sections. Patient reviewers also added their voices. Our state facts pages moved to the advocacy section.

Did you know?

  • 2017 estimates showed that as many as 92 million Americans may have arthritis (37 percent), including a third of those ages 18-64.
  • Thanks to arthritis patients, we incorporated more information on quality of life, functional status, mental health and fatigue.
  • Fatigue is related to physical inactivity, poor sleep, depression, anxiety, cognitive dysfunction (like brain fog), obesity and developing comorbidities.

2019: Our newest edition includes about 200 new and updated facts about 15 of the most common forms of arthritis. We’ve added two new sections of juvenile arthritis facts and one new section of adult facts. Arthritis patients continue to inform us, with some of our patient reviewers sharing their experiences about how these facts touch their lives. We’ve also included a short Arthritis Foundation research history in Appendix 2.

Did you know?

  • More children have some form of juvenile arthritis than those who face cystic fibrosis, juvenile diabetes and leukemia, combined.
  • Though there are an estimated 54 million Americans with doctor-diagnosed arthritis, many patients have more than one form:
    • About 44 million adults have osteoporosis.
    • Almost 31 million adults have osteoarthritis.
    • Nearly 10 million adults have one or more of the autoimmune forms of arthritis listed in this edition.
    • About 10 million adults have fibromyalgia.
    • About 8 million adults have gout.
  • Arthritis is the most common chronic condition among regular users of opioids in the U.S.

Know all about arthritis. Get the facts and check out the new 2019 Arthritis by the Numbers!