Global Healthy Living Foundation to Present Six Patient-Centered Research Abstracts at ACR Convergence 2026, Highlighting Myositis and PMR Research
The Global Healthy Living Foundation (GHLF) has announced that it will present six accepted research abstracts at ACR Convergence 2026, the annual scientific meeting of the American College of Rheumatology (ACR), scheduled to take place November 6–11, 2026, in Orlando, Florida. The research, conducted through GHLF’s patient research registry, PatientSpot, highlights patient experiences, treatment satisfaction, disease management challenges, and unmet medical needs across several inflammatory and rheumatic conditions.
The accepted abstracts cover a range of disease areas, including inflammatory myopathy (myositis), polymyalgia rheumatica (PMR), hidradenitis suppurativa (HS), rheumatoid arthritis, and fibromyalgia. Collectively, the presentations demonstrate GHLF’s continued commitment to advancing patient-centered research and ensuring that the experiences and priorities of individuals living with chronic conditions are incorporated into scientific discussions and healthcare decision-making.
Among the major highlights of this year’s research program is a cross-sectional survey examining treatment satisfaction, disease control, quality of life, and patient-defined treatment goals across different myositis subtypes. The research addresses an important gap in rheumatology, as patients with these complex inflammatory muscle diseases remain underrepresented in patient-focused clinical research.
The foundation is also highlighting its work in polymyalgia rheumatica, with one of its two accepted PMR abstracts selected for an oral podium presentation. The presentation will examine educational gaps among patients, healthcare professionals, and healthcare systems, drawing on a multi-method needs assessment funded by the Centers for Disease Control and Prevention (CDC).
In addition to these disease-specific investigations, GHLF will present comparative research examining patient-reported symptoms and treatment priorities across five inflammatory conditions. Its program also includes research on disease-modifying antirheumatic drug (DMARD) use in hidradenitis suppurativa and a patient perspective abstract describing reported improvements in pain and physical functioning during tirzepatide therapy in an individual living with rheumatoid arthritis and fibromyalgia.
Through these presentations, GHLF aims to demonstrate how patient-reported outcomes and lived experiences can provide valuable information for identifying treatment gaps, improving disease management, and guiding future research priorities.
PMR Research Earns Oral Podium Presentation at ACR Convergence
Polymyalgia rheumatica is one of the central areas of focus in GHLF’s research program at ACR Convergence 2026. The inflammatory condition primarily affects older adults and is characterized by pain and stiffness, particularly around the shoulders, neck, and hips.
The condition can significantly interfere with everyday activities, mobility, sleep, and overall quality of life. Despite its impact, awareness and understanding of PMR remain limited among patients, primary care providers, and the general public.
An estimated 700,000 Americans are affected by polymyalgia rheumatica, highlighting the importance of improving disease education, recognition, and access to appropriate care.
GHLF has accepted two abstracts addressing PMR-related challenges. One of these studies, titled Convergent and Divergent Gaps in PMR Education: Findings from a CDC-Funded Multi-Method Needs Assessment, has been selected for an oral podium presentation at the meeting.
The selection represents an important distinction because only a limited proportion of abstracts accepted at ACR Convergence receive opportunities for oral presentation.
The CDC-funded research used a multi-method approach incorporating surveys, interviews, and other needs assessment activities to investigate shortcomings in PMR education. The project examined the knowledge and information needs of different stakeholder groups, including patients, healthcare professionals, and healthcare systems.
The findings identify both common educational gaps shared across stakeholder groups and differences in the information needs and understanding of PMR among individual groups.
These findings are particularly relevant because effective disease management depends on timely recognition, accurate diagnosis, appropriate treatment decisions, and ongoing patient education.
Patients may experience difficulties understanding their symptoms, navigating diagnostic pathways, and identifying appropriate treatment options. Healthcare professionals may also face challenges associated with recognizing PMR and distinguishing it from other conditions that produce similar symptoms.
By identifying areas of agreement and differences in educational needs, the research aims to provide a foundation for developing more targeted educational resources and improving communication between patients and healthcare providers.
Seth Ginsberg, President and Co-Founder of GHLF, emphasized the significance of the podium selection and the importance of addressing longstanding gaps in PMR research and education.
“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 Ginsberg.
He further noted that PMR has historically received insufficient attention in patient-centered research.
“Our CDC-funded study shows that the gaps in education are real, measurable, and addressable — and patients deserve better,” Ginsberg added.
The foundation believes that identifying these educational shortcomings can help improve disease awareness, strengthen clinical communication, and support more informed healthcare decisions for people living with PMR.
Patient-Informed Research Identifies Critical PMR Knowledge Gaps
GHLF’s second accepted PMR abstract, titled Prioritizing Research Gaps in Polymyalgia Rheumatica Through a Patient-Informed Modified Delphi Consensus Process, focuses on identifying the most important unanswered research questions from the perspective of patients.
The study uses a modified Delphi consensus methodology, a structured approach that brings together stakeholder perspectives through a systematic process to identify and prioritize areas of agreement.
A key feature of this research is its emphasis on incorporating patient experiences into the identification of future research priorities.
The investigation examines several important areas, including diagnostic criteria, delays in diagnosis, and the need for alternatives to long-term glucocorticoid treatment.
Glucocorticoids are commonly used to manage inflammation and symptoms associated with PMR. However, prolonged treatment can be associated with significant adverse effects, making the identification of alternative therapeutic approaches an important research priority.
The study also considers the impact of PMR itself and steroid treatment on patients’ quality of life.
By placing patient perspectives at the center of the consensus process, GHLF aims to identify research questions that reflect the everyday challenges experienced by individuals living with the condition.
The findings could help researchers and healthcare professionals better understand which aspects of PMR require additional investigation and where future clinical studies may provide the greatest value to patients.
Together, the two PMR abstracts demonstrate GHLF’s efforts to address both educational and scientific gaps through research that incorporates the experiences of patients and other healthcare stakeholders.
Myositis Research Highlights Treatment Satisfaction and Patient Priorities
Another major component of GHLF’s ACR Convergence 2026 research program focuses on myositis, a group of rare and complex inflammatory muscle diseases that can cause substantial disability and affect multiple aspects of daily living.
Myositis encompasses several disease subtypes, including:
- Dermatomyositis.
- Polymyositis.
- Inclusion body myositis.
- Immune-mediated necrotizing myopathy.
These conditions are characterized by inflammation and muscle-related complications, although their clinical manifestations, progression patterns, and treatment responses can vary.
Patients may experience muscle weakness, fatigue, difficulties with mobility, and limitations in performing everyday activities. Depending on the specific subtype, the disease can also affect other organs and systems.
Despite the substantial impact of these conditions, myositis remains an underrepresented area in patient-centered research.
GHLF’s accepted abstract, titled 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 understand treatment experiences and unmet needs among individuals living with different forms of myositis.
The research examines how patients evaluate their current treatments, their perceptions of disease control, and the outcomes they consider most important when determining whether a treatment is successful.
An important focus is the difference between conventional clinical measures and the outcomes that patients prioritize in their daily lives.
For example, improvements in muscle strength, fatigue management, and functional independence may be particularly meaningful to individuals living with myositis. These outcomes can influence a patient’s ability to work, maintain independence, participate in social activities, and manage routine responsibilities.
The study also highlights variability in treatment satisfaction across different myositis subtypes, suggesting that patient experiences and therapeutic needs may not be uniform across the broader disease category.
Shilpa Venkatachalam, PhD, MPH, Chief Patient Centered Research and Ethical Oversight Officer at GHLF, emphasized the importance of understanding patient priorities when evaluating treatment effectiveness.
“Patients living with myositis are navigating one of the most complex and underrecognized areas of rheumatology,” said Dr. Venkatachalam.
She explained that the research is designed to identify what patients consider most important rather than relying on assumptions about their needs.
“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 added.
The myositis research will be presented during Poster Session B, focusing on Patient Outcomes, Preferences, and Attitudes, on Monday, November 9, 2026.
The findings are expected to contribute to a broader understanding of treatment satisfaction and patient-defined outcomes across different inflammatory muscle disease populations.
Cross-Condition Research Examines Patient-Reported Symptoms and Treatment Goals
Beyond its disease-specific research, GHLF is presenting an investigation comparing patient-reported symptom priorities and treatment goals across five inflammatory conditions.
The abstract, titled Patient-Reported Symptom Priorities and Treatment Goals Across Five Inflammatory Conditions, examines how individuals living with different inflammatory diseases describe their symptoms and identify the outcomes they want from treatment.
The research provides a comparative perspective on patient experiences across rheumatic and inflammatory conditions.
Although different inflammatory diseases may share certain symptoms, including pain, fatigue, and functional limitations, the impact of these symptoms can vary considerably among individuals.
Similarly, treatment priorities may differ depending on disease characteristics, symptom severity, disease duration, and the effects of treatment on everyday activities.
Understanding these differences is important because standardized treatment approaches may not fully address the individual needs of patients.
By examining patient-reported outcomes across five inflammatory conditions, GHLF aims to identify common priorities as well as differences that may influence treatment decisions and healthcare delivery.
The research also reinforces the importance of incorporating patient perspectives into the development of clinical outcome measures and treatment strategies.
The abstract will be presented during Poster Session B on Monday, November 9, 2026, alongside the foundation’s myositis and PMR research.
Hidradenitis Suppurativa Research Explores the Role of DMARDs
GHLF’s research program also includes an investigation examining treatment approaches for hidradenitis suppurativa (HS), a chronic inflammatory skin disease that can cause painful lesions, recurring abscesses, and scarring.
HS commonly affects areas of the body where skin rubs together, including the underarms, groin, and other skin folds. The condition can cause substantial physical discomfort and affect patients’ emotional well-being, social interactions, and quality of life.
The disease can also occur alongside other inflammatory and rheumatic conditions, creating additional challenges for treatment and long-term management.
GHLF’s accepted abstract, titled 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, investigates the relationship between disease-modifying antirheumatic drug use and multidimensional HS disease burden.
The cross-sectional analysis uses community health survey data and examines findings according to the presence of rheumatic comorbidities.
DMARDs are a broad group of medicines used to manage inflammatory and autoimmune conditions by modifying disease-related immune or inflammatory processes.
The study explores how DMARD use is associated with changes across multiple dimensions of HS disease burden.
This research is particularly relevant for individuals managing HS alongside rheumatic conditions, as overlapping inflammatory diseases can complicate treatment decisions and contribute to a greater overall disease burden.
The findings may provide additional insights into treatment patterns and the relationship between rheumatologic therapies and HS-related outcomes.
However, as a cross-sectional analysis, the research identifies associations rather than establishing that DMARD use directly causes improvements in HS.
The abstract will be presented during Poster Session A on Sunday, November 8, 2026.
Patient Advocate Abstract Highlights Reported Benefits During Tirzepatide Therapy
A notable element of GHLF’s participation at ACR Convergence 2026 is the acceptance of a patient perspective abstract submitted by Shelley Fritz, a GHLF patient advocate.
Titled Beyond the Scale: Patient-Reported Resolution of Pain and Dramatic Functional Gains During Tirzepatide Therapy in Rheumatoid Arthritis and Fibromyalgia, the abstract describes reported improvements in pain and physical functioning during tirzepatide treatment in an individual living with rheumatoid arthritis and fibromyalgia.
Tirzepatide is a medication that acts on glucose-dependent insulinotropic polypeptide (GIP) and glucagon-like peptide-1 (GLP-1) receptors. It has established uses in metabolic conditions, including type 2 diabetes and weight management.
Interest in GLP-1 receptor agonists and related therapies has expanded beyond metabolic health, with researchers exploring their potential effects on inflammation and other disease-related processes.
For individuals living with rheumatoid arthritis and fibromyalgia, pain, fatigue, and physical limitations can substantially affect quality of life.
The patient perspective presented in the abstract highlights reported changes in pain and functional abilities during tirzepatide therapy, providing an example of how individual treatment experiences may generate questions for further scientific investigation.
GHLF’s inclusion of this abstract reflects its commitment to recognizing patient experiences as an important component of medical research.
The foundation also identifies GLP-1-based therapies as an emerging area of interest in inflammatory and rheumatic disease research, where patient-reported experiences are developing alongside a still-evolving scientific evidence base.
Importantly, an individual patient experience cannot establish treatment efficacy or demonstrate that tirzepatide is an effective therapy for rheumatoid arthritis or fibromyalgia. Further controlled clinical research will be necessary to evaluate any potential role in these conditions.
Nevertheless, patient-generated observations can help identify research questions and encourage scientific investigation into treatment effects that may not be fully captured by conventional clinical measures.
The abstract will be presented during Poster Session A on Sunday, November 8, 2026, as part of the Patient Engagement category.
Six Accepted Abstracts at ACR Convergence 2026
GHLF’s six accepted abstracts will be presented across poster sessions and an oral podium session during the annual meeting.
| No. | Research abstract | Presenter | Presentation details |
|---|---|---|---|
| 1 | DMARD Use Is Associated with the Broadest Reduction in Hidradenitis Suppurativa Multidomain Disease Burden | Shilpa Venkatachalam, GHLF | Poster Session A, Abstract 0594; November 8, 2026, 10:30 a.m.–12:30 p.m. ET |
| 2 | Treatment Satisfaction, Disease Control, and Patient-Defined Treatment Goals Across Myositis Subtypes | Shilpa Venkatachalam, GHLF | Poster Session B, Abstract 1546; November 9, 2026, 10:30 a.m.–12:30 p.m. ET |
| 3 | Patient-Reported Symptom Priorities and Treatment Goals Across Five Inflammatory Conditions | Shilpa Venkatachalam, GHLF | Poster Session B, Abstract 1540; November 9, 2026, 10:30 a.m.–12:30 p.m. ET |
| 4 | Convergent and Divergent Gaps in PMR Education: Findings from a CDC-Funded Multi-Method Needs Assessment | Angela Degrassi, GHLF | Oral Podium Presentation; November 11, 2026, 12:00 p.m.–12:15 p.m. ET |
| 5 | Prioritizing Research Gaps in Polymyalgia Rheumatica Through a Patient-Informed Modified Delphi Consensus Process | Ian Carroll, GHLF | Poster Session B, Abstract 1542; November 9, 2026, 10:30 a.m.–12:30 p.m. ET |
| 6 | Beyond the Scale: Patient-Reported Resolution of Pain and Dramatic Functional Gains During Tirzepatide Therapy in Rheumatoid Arthritis and Fibromyalgia | Shelley Fritz | Poster Session A, Abstract PP01–PP19; November 8, 2026, 10:30 a.m.–12:30 p.m. ET |
The oral podium presentation on November 11 represents a particular highlight of the program, while the poster presentations on November 8 and 9 will provide opportunities for researchers and healthcare professionals to engage with the foundation’s broader patient-centered research findings.
Research Funding and Patient Contributions
GHLF acknowledged the government, industry, and nonprofit organizations whose financial support made the research possible. The foundation also recognized the contributions of researchers and clinicians from academic and medical institutions across the United States and internationally.
Patient participation remains central to the foundation’s research approach. Individuals living with chronic inflammatory conditions contribute their experiences and perspectives, helping researchers identify unmet needs and develop studies that reflect real-world challenges.
Funding sources for the individual studies are disclosed in their respective abstracts.
In accordance with the American College of Rheumatology’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 the abstracts may not be released until the abstracts appear online.
Advancing Patient-Centered Rheumatology Research
GHLF’s participation in ACR Convergence 2026 demonstrates its ongoing commitment to expanding the role of patient experiences in rheumatology and inflammatory disease research.
Through PatientSpot, the foundation is supporting investigations that examine not only clinical aspects of chronic conditions but also the outcomes that patients consider important in their everyday lives.
The six accepted abstracts address several interconnected challenges, including limited disease awareness, treatment satisfaction, symptom management, diagnostic delays, medication-related concerns, and the need for more individualized approaches to care.
The research on myositis and PMR particularly highlights conditions where additional patient-centered investigation could help address longstanding gaps in understanding and treatment.
Meanwhile, the studies involving hidradenitis suppurativa, multiple inflammatory conditions, and tirzepatide-related patient experiences broaden the discussion to include overlapping inflammatory diseases and emerging therapeutic research questions.
By bringing these findings to an international rheumatology meeting, GHLF aims to encourage greater collaboration among patients, clinicians, and researchers while helping establish research priorities that reflect the needs of people living with chronic illness.
The foundation’s six accepted abstracts reinforce the importance of treating patient perspectives as an essential part of scientific discovery rather than simply an additional source of information. As rheumatology research continues to evolve, incorporating patient-defined treatment goals and real-world experiences may help guide the development of more meaningful outcome measures, improve healthcare communication, and support treatment strategies that better reflect individual patient needs.
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.