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View article: Protocol for a two-arm parallel randomized controlled trial to evaluate patient and researcher co-presentation of research results: the Scleroderma Patient-centered Intervention Network—Patients Alongside Investigators in Research-Sharing (SPIN-PAIRS) trial
Protocol for a two-arm parallel randomized controlled trial to evaluate patient and researcher co-presentation of research results: the Scleroderma Patient-centered Intervention Network—Patients Alongside Investigators in Research-Sharing (SPIN-PAIRS) trial Open
Findings will contribute to the evidence base on effective strategies for sharing results with study participants and others with relevant lived experience. Trial registration ISRCTN12805381 ( https://www.isrctn.com/ISRCTN12805381 ).
View article: Rethinking Strategies for a Pharmaceutical Approach to Pain Related to Connective Tissue–Related Raynaud Phenomenon in the United States
Rethinking Strategies for a Pharmaceutical Approach to Pain Related to Connective Tissue–Related Raynaud Phenomenon in the United States Open
Objective There are no US Food and Drug Administration–approved therapies for Raynaud phenomenon (RP) in the United States. Clinical trials have been challenged by study design. Important advances in RP patient‐reported outcome measures an…
View article: Treatment recommendations for the systemic pharmacological treatment of systemic sclerosis digital ulcers: Results from the World Scleroderma Foundation Ad Hoc Committee
Treatment recommendations for the systemic pharmacological treatment of systemic sclerosis digital ulcers: Results from the World Scleroderma Foundation Ad Hoc Committee Open
Introduction: Digital ulcers are an important disease manifestation of systemic sclerosis and are associated with significant morbidity. As such, there is an urgent need for the development of evidence-based recommendations to guide clinic…
View article: ‘Am I doing this right?’ Physician perceptions of the global assessment in clinical trials of systemic sclerosis
‘Am I doing this right?’ Physician perceptions of the global assessment in clinical trials of systemic sclerosis Open
Objectives Physician global assessments (PhyGAs) are commonly performed in randomized controlled trials (RCTs) in SSc. However, there is no single PhyGA applied across RCTs. We performed an exploratory qualitative study to explore percepti…
View article: Cardio-rheumatology: integrated care and the opportunities for personalized medicine
Cardio-rheumatology: integrated care and the opportunities for personalized medicine Open
While severe vasculopathic manifestations of systemic sclerosis (SSc) are well-recognized, characterization of subclinical progressive vasculopathy contributing to cardiac involvement remains an unmet clinical need. This review highlights …
View article: Hand Swelling and Other Non–Raynaud Phenomenon Symptoms as the Initial Presentation of Systemic Sclerosis: Prevalence and Clinical Associations in Two <scp>US</scp> Cohorts
Hand Swelling and Other Non–Raynaud Phenomenon Symptoms as the Initial Presentation of Systemic Sclerosis: Prevalence and Clinical Associations in Two <span>US</span> Cohorts Open
Objective Raynaud phenomenon (RP) is often the initial clinical manifestation of systemic sclerosis (SSc), but some patients develop other manifestations first. To help elucidate the diversity of SSc presentation in its early stages, we de…
View article: Recommendations for the local management of digital ulcers in systemic sclerosis: A report from the World Scleroderma Foundation (WSF) ‘Ad hoc committee’
Recommendations for the local management of digital ulcers in systemic sclerosis: A report from the World Scleroderma Foundation (WSF) ‘Ad hoc committee’ Open
Introduction: Digital ulcers (DUs) stand out as one of the most prevalent and clinically meaningful manifestations of systemic sclerosis (SSc) and are associated with significant morbidity. While systemic (pharmacological) therapy is curre…
View article: Comparative Efficacy of Immunosuppressive Therapies in the Treatment of Diffuse Cutaneous Systemic Sclerosis
Comparative Efficacy of Immunosuppressive Therapies in the Treatment of Diffuse Cutaneous Systemic Sclerosis Open
Objectives The RESOLVE‐1 trial of lenabasum in diffuse cutaneous systemic sclerosis (dcSSc) allowed background immunosuppressive therapy (IST) at the discretion of individual investigators, and no significant differences were observed betw…
View article: Fatigue levels and associated factors in systemic sclerosis: a cross-sectional study of 2385 SPIN Cohort participants
Fatigue levels and associated factors in systemic sclerosis: a cross-sectional study of 2385 SPIN Cohort participants Open
Objectives The objectives of this study were to compare fatigue in a large multinational SSc cohort with general population data and identify associated sociodemographic, lifestyle and SSc disease factors. Methods Scleroderma Patient-cente…
View article: Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary
Basic concepts in preserving holistic well-being in interstitial lung diseases: A MIHRA and G-FoRSS collaborative summary Open
Background: Interstitial lung diseases (ILD) are a heterogenous group of diseases that involve inflammation and/or fibrosis of the lung parenchyma. ILD can exert significant stress on a person’s extrapulmonary systems, eroding organ and ph…
View article: 2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Treatment of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases
2023 American College of Rheumatology (ACR)/American College of Chest Physicians (CHEST) Guideline for the Treatment of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases Open
Objective We provide evidence‐based recommendations regarding the treatment of interstitial lung disease (ILD) in adults with systemic autoimmune rheumatic diseases (SARDs). Methods We developed clinically relevant population, intervention…
View article: 2023 American College of Rheumatology (<scp>ACR</scp>)/American College of Chest Physicians (<scp>CHEST</scp>) Guideline for the Screening and Monitoring of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases
2023 American College of Rheumatology (<span>ACR</span>)/American College of Chest Physicians (<span>CHEST</span>) Guideline for the Screening and Monitoring of Interstitial Lung Disease in People with Systemic Autoimmune Rheumatic Diseases Open
Objective We provide evidence‐based recommendations regarding screening for interstitial lung disease (ILD) and the monitoring for ILD progression in people with systemic autoimmune rheumatic diseases (SARDs), specifically rheumatoid arthr…
View article: Midkine is a Potential Novel Biomarker for Acro-osteolysis in Systemic Sclerosis
Midkine is a Potential Novel Biomarker for Acro-osteolysis in Systemic Sclerosis Open
Background: Digital acro-osteolysis can result from ischemia and is a complication of systemic sclerosis (SSc). Midkine (MK) is an angiogenic growth factor that plays a key role in bone remodeling. The objective of this study was to examin…
View article: EphB2 Receptor Promotes Dermal Fibrosis in Systemic Sclerosis
EphB2 Receptor Promotes Dermal Fibrosis in Systemic Sclerosis Open
Objective Erythropoietin‐producing hepatocellular (Eph)/Ephrin cell–cell signaling is emerging as a key player in tissue fibrogenesis. The aim of this study was to test the hypothesis that the receptor tyrosine kinase EphB2 mediates dermal…
View article: Development of a Musculoskeletal Ultrasound Protocol to Evaluate Hand Pain in Systemic Sclerosis Patients
Development of a Musculoskeletal Ultrasound Protocol to Evaluate Hand Pain in Systemic Sclerosis Patients Open
Hand impairment is a frequently reported complaint in systemic sclerosis (SSc) patients and a leading cause of disability and diminished quality of life. Managing hand pain can be particularly challenging due to the coexistence of non-infl…
View article: Factors associated with physical function among people with systemic sclerosis: a SPIN cohort cross-sectional study
Factors associated with physical function among people with systemic sclerosis: a SPIN cohort cross-sectional study Open
Objectives To compare physical function in systemic sclerosis (SSc, scleroderma) to general population normative data and identify associated factors. Methods Scleroderma Patient-centered Intervention Network Cohort participants completed …
View article: Important Considerations for Bone Health Management in Systemic Sclerosis Patients
Important Considerations for Bone Health Management in Systemic Sclerosis Patients Open
Bone health in systemic sclerosis (SSc) is an essential management consideration for rheumatologists caring for these patients. Screening for reduction in bone density includes a detailed health history, which includes SSc disease features…
View article: Prognostic significance of pericardial effusion in systemic sclerosis-associated pulmonary hypertension: analysis from the PHAROS Registry
Prognostic significance of pericardial effusion in systemic sclerosis-associated pulmonary hypertension: analysis from the PHAROS Registry Open
Objectives Pulmonary hypertension (PH) is a leading cause of death in patients with SSc. The purpose of this study was to determine the prognostic significance of pericardial effusion in patients with SSc-PH. Methods Pulmonary Hypertension…
View article: Construct validity and reliability of the Assessment of Systemic Sclerosis-Associated Raynaud’s Phenomenon (ASRAP) questionnaire
Construct validity and reliability of the Assessment of Systemic Sclerosis-Associated Raynaud’s Phenomenon (ASRAP) questionnaire Open
Objectives Assessment of construct validity and reliability of a novel patient-reported outcome (PRO) instrument for assessing the severity and impact of RP in SSc. Methods An international multicentre study validation study of the 27-item…