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Updated: Jan 27, 2026
An Immunohistopathologic Study to Profile the Folate Receptor Beta Macrophage and Vascular Immune Microenvironment in Giant Cell Arteritis
Published on: February 8, 2019
2018 EULAR recommendations for a core data set to support observational research and clinical care in giant cell
Lisa Ehlers1, Johan Askling2, Hans Wj Bijlsma3
1Department of Rheumatology and Clinical Immunology, Charité University Medicine Berlin, Berlin, Germany lisa.ehlers@charite.de.
Insights
Giant cell arteritis (GCA) research is enhanced by a new core set of 50 essential parameters. This standardized data collection will improve clinical care and collaborative studies for GCA patients.
Area of Science:
- Rheumatology
- Clinical Epidemiology
Background:
- Giant cell arteritis (GCA) is the most common systemic vasculitis, often linked with comorbidities.
- Systematic data collection on GCA's course, treatment, and outcomes is limited.
- Standardized data is crucial for advancing GCA research and patient care.
Purpose of the Study:
- To establish a core set of essential parameters for collecting GCA data.
- To facilitate collaborative research and improve clinical management of GCA.
- To create a standardized framework for GCA registries and databases.
Main Methods:
- A multidisciplinary European League Against Rheumatism (EULAR) Task Force of 20 experts was convened.
- A 1-day meeting, followed by email discussions and a three-round Delphi survey, was used to reach consensus.
- 117 relevant parameters were identified and categorized, leading to a minimum core set of 50 parameters.
Main Results:
- A consensus was reached on a minimum core set of 50 parameters for GCA data collection.
- Parameters cover general information, demographics, GCA symptoms, comorbidities, and treatments.
- Proposed instruments and assessment intervals were suggested for documentation.
Conclusions:
- The proposed core set of 50 parameters will enable standardized data collection across GCA registries.
- This standardization will facilitate comparative research and enhance clinical care for GCA patients.
- The core set aims to improve the understanding and management of GCA globally.
Abstract:
Giant cell arteritis (GCA) represents the most common form of primary systemic vasculitis and is frequently associated with comorbidities related to the disease itself or induced by the treatment. Systematically collected data on disease course, treatment and outcomes of GCA remain scarce. The aim of this EULAR Task Force was to identify a core set of items which can easily be collected by experienced clinicians, in order to facilitate collaborative research into the course and outcomes of GCA. A multidisciplinary EULAR task force group of 20 experts including rheumatologists, internists, epidemiologists and patient representatives was assembled. During a 1-day meeting, breakout groups discussed items from a previously compiled collection of parameters describing GCA status and disease course. Feedback from breakout groups was further discussed. Final consensus was achieved by means of several rounds of email discussions after the meeting. A three-round Delphi survey was conducted to determine a core set of parameters including the level of agreement. 117 parameters were regarded as relevant. Potential items were subdivided into the following categories: General, demographics, GCA-related signs and symptoms, other medical conditions and treatment. Possible instruments and assessment intervals were proposed for documentation of each item. To facilitate implementation of the recommendations in clinical care and clinical research, a minimum core set of 50 parameters was agreed. This proposed core set intends to ensure that relevant items from different GCA registries and databases can be compared for the dual purposes of facilitating clinical research and improving clinical care.
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