Global Healthy Living Foundation Advances Myositis and Polymyalgia Rheumatica (PMR) Research at ACR Convergence 2026

Six Accepted Abstracts Demonstrate GHLF/PatientSpot's Leadership in Patient-Centered Rheumatology Research, including a CDC-Funded PMR Needs-Assessment Selected for Podium Presentation

UPPER NYACK, N.Y.--(BUSINESS WIRE)--The Global Healthy Living Foundation (GHLF) using its patient research registry, PatientSpot, will present six accepted abstracts at ACR Convergence 2026, the American College of Rheumatology's annual meeting November 6–11 in Orlando, FL.

The accepted research spans inflammatory myopathy (myositis), polymyalgia rheumatica (PMR), hidradenitis suppurativa (HS), and several other inflammatory conditions — reflecting GHLF's commitment to patient-driven science across the chronic disease spectrum.

Among the highlights this year, GHLF's research on myositis takes center stage with a cross-sectional survey examining treatment satisfaction, disease control and quality of life, and patient-defined treatment goals across myositis subtypes -- conditions that remain significantly underrepresented in patient-centered research. The study underscores unmet needs in treatment satisfaction and disease control, with implications for aligning care with patient priorities.

In addition, one abstract examining convergent and divergent gaps in PMR education has been selected for an oral podium presentation, a distinction given to a small proportion of abstracts accepted at ACR Convergence.

PMR Podium Moment: Convergences and Divergences in Education Gaps

Polymyalgia rheumatica affects an estimated 700,000 Americans — yet awareness among patients, primary care providers, and the public remains limited. GHLF's two accepted PMR abstracts reflect its growing investment in addressing that gap through patient-informed research, one of which has earned a distinction given to a limited number of abstracts at ACR Convergence.

Convergent and Divergent Gaps in PMR Education: Findings from a CDC-Funded Multi-Method Needs Assessment has been selected for an oral podium presentation. Funded by the Centers for Disease Control and Prevention (CDC), this multi-method project used surveys, interviews, and other needs assessment methods to identify where PMR education falls short — and where it matters most. The findings reveal both shared gaps (convergences) and stakeholder-specific mismatches (divergences) in what patients, clinicians, and healthcare systems understand about PMR — and what they do not.

A second PMR abstract, Prioritizing Research Gaps in Polymyalgia Rheumatica Through a Patient-Informed Modified Delphi Consensus Process, presents findings from a structured consensus methodology that centered the patient voice in identifying the most critical unanswered questions in PMR research from diagnostic criteria and delays to alternatives to long-term glucocorticoids and the effects of PMR and steroids on quality of life.

"Being selected for a podium presentation at ACR Convergence is a testament to the rigor of this work and, more importantly, to why it matters," said Seth Ginsberg, President and Co-Founder of GHLF.

"PMR has historically been underserved by patient-centered research. Our CDC-funded study shows that the gaps in education are real, measurable, and addressable — and patients deserve better,” Ginsberg said.

Myositis in Focus: Centering Patient Voices in a Complex Disease

Myositis encompasses a group of rare and heterogeneous inflammatory muscle diseases — including dermatomyositis, polymyositis, inclusion body myositis, and immune-mediated necrotizing myopathy — that can cause profound disability, but they remain poorly understood. GHLF's accepted abstract, Treatment Satisfaction, Disease Control, and Patient-Defined Treatment Goals Across Myositis Subtypes: An Interim Analysis of a Cross-Sectional Patient-Reported Outcomes Survey, presents interim findings from a survey designed to capture treatment satisfaction and identify unmet needs across some of these subtypes.

The study captures how patients across specific myositis subtypes define and prioritize treatment goals and success — often in ways that diverge from clinical endpoints. Key themes include unmet needs in muscle strength recovery, fatigue management, and functional independence, as well as variability in treatment satisfaction across disease subtypes.

"Patients living with myositis are navigating one of the most complex and underrecognized areas of rheumatology," said Shilpa Venkatachalam, PhD, MPH, Chief Patient Centered Research and Ethical Oversight Officer at GHLF.

"This research helps us understand what matters most to patients, not what we assume matters, and that distinction is foundational to improving care. At GHLF, patient-centered research is not a methodology, it is a commitment. Every study we bring to ACR Convergence starts with a simple question: what do patients need science to answer? That is what drives this work, and that is what makes it matter,” Dr. Venkatachalam said.

The myositis poster will be presented during Poster Session B — Patient Outcomes, Preferences, & Attitudes on Monday, November 9, 2026, from 10:30 AM – 12:30 PM ET.

Patient Voices and Cross-Condition Insights

In addition to its disease-specific research, GHLF is presenting work that cuts across five inflammatory conditions to illuminate how patients prioritize symptoms and frame treatment goals — findings that challenge one-size-fits-all approaches to care. Patient-Reported Symptom Priorities and Treatment Goals Across Five Inflammatory Conditions offers a comparative lens for understanding patient experience in rheumatic/inflammatory disease, presented during Poster Session B on Monday, November 9.

GHLF is also presenting research on hidradenitis suppurativa (HS) at the intersection of dermatology and rheumatology: DMARD Use Is Associated with the Broadest Reduction in HS Multidomain Disease Burden, a cross-sectional analysis with implications for patients managing HS alongside rheumatic comorbidities. This poster will be presented during Poster Session A on Sunday, November 8.

This year also marks a meaningful moment for the patient research community: Shelley Fritz, a GHLF patient advocate, had her patient perspective abstract accepted — Beyond the Scale: Patient-Reported Resolution of Pain and Dramatic Functional Gains During Tirzepatide Therapy in Rheumatoid Arthritis and Fibromyalgia. Her abstract exemplifies GHLF's commitment to centering lived experience alongside scientific inquiry and is a reminder that the patient's voice is not a supplement to research — it is the foundation of it. This abstract also signals GHLF's interest in the emerging role of GLP-1 receptor agonists in inflammatory and rheumatic disease, an area where patient-reported experience is already outpacing the evidence base, and one where GHLF intends to deepen its research in the coming years.

Accepted Abstracts at ACR Convergence 2026

1. DMARD Use Is Associated with the Broadest Reduction in Hidradenitis Suppurativa Multidomain Disease Burden: A Cross-Sectional Analysis of a Community Health Survey Stratified by Rheumatic Comorbidity | Shilpa Venkatachalam, GHLF | Poster Session A (0594) | Patient Outcomes, Preferences, & Attitudes | Sunday, November 8, 2026 | 10:30 AM – 12:30 PM ET

2. Treatment Satisfaction, Disease Control, and Patient-Defined Treatment Goals Across Myositis Subtypes: An Interim Analysis of a Cross-Sectional Patient-Reported Outcomes Survey | Shilpa Venkatachalam, GHLF | Poster Session B (1546) | Patient Outcomes, Preferences, & Attitudes | Monday, November 9, 2026 | 10:30 AM – 12:30 PM ET

3. Patient-Reported Symptom Priorities and Treatment Goals Across Five Inflammatory Conditions | Shilpa Venkatachalam, GHLF | Poster Session B (1540) | Patient Outcomes, Preferences, & Attitudes | Monday, November 9, 2026 | 10:30 AM – 12:30 PM ET

4. Convergent and Divergent Gaps in PMR Education: Findings from a CDC-Funded Multi-Method Needs Assessment | Angela Degrassi, GHLF | ★ Selected for Oral Podium Presentation | Patient Education/Community Programs | Wednesday, November 11, 2026 | 12:00 PM - 12:15 PM ET

5. Prioritizing Research Gaps in Polymyalgia Rheumatica Through a Patient-Informed Modified Delphi Consensus Process | Ian Carroll, GHLF | Poster Session B (1542) | Patient Outcomes, Preferences, & Attitudes | Monday, November 9, 2026 | 10:30 AM - 12:30 PM ET

6. Patient Perspective Abstract: Beyond the Scale: Patient-Reported Resolution of Pain and Dramatic Functional Gains During Tirzepatide Therapy in Rheumatoid Arthritis and Fibromyalgia | Shelley Fritz, GHLF | Poster Session A (PP01-PP19) | Patient Engagement | Sunday, November 8, 2026 |10:30 AM - 12:30 PM ET

Acknowledgments, Funding, and About GHLF

GHLF gratefully acknowledges the government, industry, and nonprofit partners whose funding made this research possible, as well as the researchers and clinicians at academic and medical institutions across the United States and internationally who contributed their expertise. Above all, we thank the patients and community members whose participation and lived experience are at the heart of this work. Funding sources for each study are disclosed in the individual abstracts. Note: In accordance with ACR's Embargo Policy, accepted abstracts are made available to the public online in advance of the meeting and are published in a special online supplement of Arthritis & Rheumatology. Information contained in those abstracts may not be released until the abstracts appear online.

About the Global Healthy Living Foundation, the Global Healthy Living Foundation (GHLF) is a 501(c)(3) nonprofit organization whose mission is to improve the quality of life for people living with chronic illness by advocating for improved access to healthcare, conducting patient-centered research, and providing education and community support. GHLF operates CreakyJoints, one of the largest digital communities for people living with arthritis and related conditions, and PatientSpot (formerly ArthritisPower), a patient research registry that enables people to contribute to and learn from real-world health data. GHLF does not solicit public donations and is funded worldwide by government grants, foundations, and industry partners. For more information, visit www.ghlf.org.