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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.

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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.

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get a grip on arthritis 2018

Getting a Head Start on Arthritis Awareness Month: PopSockets Is Helping Move the Needle

Order your phone grip by March 31, 2018 to support the Arthritis Foundation!

Though National Arthritis Month isn’t until May, the Arthritis Foundation is already putting an even brighter spotlight on America’s #1 cause of disability.

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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:

Living Your Yes with RA Events 2017

2018 Living Your Yes With RA

Living Your Yes with RA is a personalized goal-setting event brought to you by the Arthritis Foundation. This free forum gives you the opportunity to learn ways that can help you say Yes more than No, despite the challenges of living with rheumatoid arthritis (RA). You’ll get expert advice from a local rheumatologist plus guidance on setting goals that can help you live life to the fullest. Let us help you manage your RA, as well as communicate effectively with your own doctor.
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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.

LARGE GRANT AWARDEES

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

SMALL GRANTS

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.

exercise as arthritis physical therapy

Too Few People With Arthritis Try the Top Recommended Therapy: Physical Activity

Physical exercise is recommended as the first approach for relief of arthritis symptoms, yet many people do not participate in regular physical activity. New research suggests that doctors and other health care professionals who treat people with arthritis are doing a better job at counseling them on physical exercise, but there is still plenty of room for improvement.

A study published recently by the Centers for Disease Control and Prevention (CDC) found that the number of people with arthritis who said they were counseled by a health care professional about doing exercise to improve arthritis symptoms increased by 18 percent between 2002 and 2014, from 52 percent to 61 percent. But that means that approximately 40 percent of people with arthritis who seek medical care still are not getting appropriate counseling at their medical visits. The findings appeared in the Morbidity and Mortality Weekly Report (MMWR), published by the CDC.

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planned giving power attorney

Power of Attorney: The Importance of Being Prepared         

By Lauren J. Wolven

A few years ago, my partner received a scary phone call from her child’s college roommate. Her child had collapsed in the dorm bathroom while getting ready for class and was in the hospital. Terrified, my partner contacted the hospital, and she was shocked to learn they couldn’t release any information because her child was over 18 and legally an adult. The hospital required a medical power of attorney before they could tell her anything. She had to make the thousand-mile trip not knowing how her child was doing. It was one of the worst situations a parent could face.   

What if you got a call that your loved one – spouse, parent or adult child – was in the hospital?  Would you be prepared? It can be overwhelming to even think about, but guidance and help are available. 
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dr caroline jefferies

Researchers on the Path to a Cure – Spotlight on Dr. Caroline Jefferies

Lupus is a chronic, autoimmune disease and affects a wide part of the body, including the joints, kidneys, skin, blood, brain and other organs. One of our six Delivering on Discovery projects focuses on Lupus and lung disease. “Lupus is a complex disease. It affects many organs. The number of lupus patients with lung inflammation is probably underestimated. Yet it negatively impacts the quality of life in these patients,” explained Dr. Caroline Jefferies. “And while we have a basic understanding about how lupus affects various organs, we need to better understand how it affects the lungs to better manage and treat it.”

Dr. Jefferies is focusing on the lungs with her 3-year Arthritis Foundation-funded project, “Inflammatory neutrophils in lupus lung disease –  novel cellular target”.

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FDA Osteoarthritis Research

Synvisc-One Injections Recalled

Biotech giant Sanofi Genzyme has initiated a voluntary product recall for one lot of Synvisc-One, a brand of hyaluronic acid. The lot, which was found to contain contamination, has been linked to an unexpected increase in side effects. In an urgent “product hold” letter, doctors, clinics and pharmacies who received syringes from that lot were instructed to immediately stop using the injections on patients until the company can investigate.
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