Global Healthy Living Foundation Brings Innovative and Patient-Centered Polymyalgia Rheumatica, Psoriatic, and Rheumatoid Arthritis Research to ACR Convergence 2024

FOR IMMEDIATE RELEASE  

MEDIA CONTACT

Susan Jara

Phone: 201-406-7756

Email: [email protected]

Adding to the significance, GHLF’s CreakyJoints® community celebrates its 25th anniversary of advocacy for arthritis patients and caregivers, along with nearly a decade of participation at ACR. “These milestones are a testament to the impact of working together to produce research that is not only rigorous but also accessible, relevant, and meaningful to patients,” said CreakyJoints Co-founder Seth Ginsberg.

A key focus of GHLF’s research at ACR this year is on PMR treatment and understanding gaps in patient care. One study, “Baseline Evaluation of Diagnoses and Prescribing Patterns in Polymyalgia Rheumatica,” reveals a widespread reliance on steroids for PMR and PMR with giant cell arteritis (GCA), but often without additional therapies that could help reduce the negative long-term side effects of steroid use. This underscores the need for continued research for new therapeutics and the importance of clinical trials.

“Patient care for PMR can be improved, and there is potential to reduce the burden of steroid use,” said Laura Stradford, MPH, Associate Director, Patient Centered Research and Epidemiology, GHLF. “This finding highlights the need for more comprehensive PMR treatment options that go beyond steroids to provide a balanced approach that we know patients want.”

Digital health innovations are also at the forefront, with GHLF’s multi-year WEAR study showcasing how Fitbit data, combined with patient-reported outcomes, enhances RA monitoring without added burden. “It’s all about making health care more personalized and centered around the patient,” said Shilpa Venkatachalam, PhD, Chief Patient-Centered Research Operations and Ethical Oversight Officer at GHLF. “Patient-reported data plays a crucial role in enabling individuals who live with chronic disease, researchers, and clinicians to provide and gain valuable insights that help guide treatment decisions and support proactive disease management throughout the patient journey.”

Another study examined the feasibility of Remote Therapeutic Monitoring (RTM) for musculoskeletal diseases, using the PatientSpot app to enable patients to report symptoms and treatment progress between visits. The study found high levels of satisfaction among both patients and office staff, suggesting that RTM has strong potential to enhance patient engagement and continuous support between clinical visits. “RTM’s value in many chronic conditions lies in proactive management and timely interventions, helping health care providers respond quickly to symptom changes, optimize treatment plans, and improve outcomes for musculoskeletal conditions,” said Angela Degrassi, Senior Manager, Patient Centered Research Operations and Engagement.

Additionally, this research will show the importance of preventing infections and managing other health issues that often come with these diseases. These insights can help researchers, doctors, and patients maintain disease stability and improve overall health by treating the whole person.

Eight Scientific Posters by GHLF, in collaboration with partnering experts and institutions, presented at the ACR Convergence 2024:

• Baseline Evaluation of Diagnoses and Prescribing Patterns in Polymyalgia Rheumatica: Poster Session A: 11/16/2024 10:30 AM -12:30 PM
• Use of Machine Learning to Evaluate Incremental Value of Actigraphy Data for Classifying Treatment Response in Patients with Rheumatoid Arthritis: Poster Session A: 11/16/2024 10:30 AM – 12:30 PM
• Challenges and Opportunities in Post-Pandemic Remote Therapeutic Monitoring for Musculoskeletal Disease: Poster Session B: 11/17/24 10:30 AM-12:30 PM
• Top Self-Reported Comorbidities Among Patients with Rheumatoid Arthritis, Psoriatic Arthritis, and Axial Spondyloarthritis Baseline: Poster Session B: 11/17/24 10:30 AM-12:30 PM
• Patient-Reported Outcomes in Inflammatory Arthritis: A Four-Year Post-COVID-19 Analysis via the PatientSpot Research Registry: Poster Session B: 11/17/24 10:30 AM-12:30 PM
• Addressing Gaps in Polymyalgia Rheumatica: A Systemic Literature Review: Poster Session A: 11/16/2024 10:30 AM – 12:30 PM
• Immunosuppressive Medications and Common Infections in Patients with Rheumatoid Arthritis: Poster Session C: 11/18/2024 10:30-12:30
• Impact of Common Infections on Medication Interruptions, Quality of Life, and Disease Flares in Patients with Rheumatoid Arthritis: Poster Session C: 11/18/2024 10:30-12:30

Patient Perspectives: Real-World Experiences

In addition to presenting scientific abstracts, GHLF will feature four patient poster presentations at ACR Convergence 2024, sharing real-world insights from those living with chronic inflammatory diseases.

“These perspectives are crucial for understanding the practical impact of disease management on daily life, offering valuable insights that can guide more responsive, patient-centered approaches in research and treatment,” said Dr. Venkatachalam, who lives with rheumatoid arthritis and osteoarthritis.

Sarah Shaw, Associate Director, Diversity, Equity and Inclusion, and JP Summers, Senior Patient Advocate, Community Outreach Manager, will present their experiences with ChronicHue, a community established by GHLF to support Black, Indigenous, and People of Color (BIPOC) individuals with chronic illnesses. “We know that health care disparities exist. We know that certain chronic illnesses are hitting historically marginalized populations and emerging ones harder. We created this space to help open up and normalize health discussions that might not be happening in our communities,” said Shaw.

Shelley Fritz, Patient-Centered Engagement and Insights Manager, GHLF will present her journey using systematic research methods to understand her rheumatoid arthritis and gastrointestinal symptoms. By conducting a structured literature review, Shelley found that a low FODMAP diet could help manage her GI symptoms, demonstrating the empowering role that self-directed, high-quality research can play in guiding personal health decisions.

Patient Perspectives Posters Accepted:

• Patient Perspective: How Completing a Systematic Literature Review Improved How I Research My Own Rheumatoid Arthritis and Comorbidities: Poster Session A: 11/16/2024 10:30 AM – 12:30 PM
• Patient Perspective: Sweat It Out: How the Sauna Has Helped Me Cope with Rheumatoid Arthritis: Poster Session A: 11/16/2024 10:30 AM – 12:30 PM
• Patient Perspective: Healing Together: The Role of Black, Indigenous and People of Color (BIPOC) – Only Chronic Illness Spaces in Comprehensive Care: Poster Session A: 11/16/2024 10:30 AM – 12:30 PM
• Patient Perspective: Utilization of My Knee Notes for Enhanced Healthcare Management
  Tien Sydor-Campbell: Poster A: 11/16/204 3:00 PM – 4:00 PM

About the Global Healthy Living Foundation

The Global Healthy Living Foundation is a U.S. based, 501(c)(3) nonprofit, international organization whose mission is to improve the quality of life for people with chronic illnesses by advocating for improved access to health care through education, patient-centered clinical research, support, advocacy, and economic and policy research. GHLF is also a staunch advocate for vaccines. The Global Healthy Living Foundation is the parent organization of CreakyJoints®, the international, digital community for millions of people living with arthritis and their supporters worldwide who seek education, support, activism, and patient-centered research in English, Spanish, and French.

In addition to arthritis and autoimmune disorders, GHLF supports dermatology, gastroenterology, neurology, cardiology, oncology, infectious disease, rare disease, and pulmonary patients through a host of different programs and activities which draw more than 700,000 patients a month to GHLF websites and create more than 10 million impressions a month on seven social media platforms. GHLF totals more than 3.7 million views with its patient-centered audio-visual content, found on YouTube and totals more than 840,000 listens on podcast platforms. GHLF never asks the public for donations, receiving funding instead through governments, non-governmental organizations, foundations, industry, family foundations and co-founder Louis Tharp.