April 03, 2019
2 min read

EULAR recommends core data set to standardize giant cell arteritis registries

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A core data set of 50 items collected from patients with giant cell arteritis, covering general and demographic information, as well as signs and symptoms, medical conditions and treatment, could provide a standardized collection of relevant information and help physicians make future diagnoses, according to a EULAR recommendation published in the Annals of the Rheumatic Diseases.

“The number and comprehensiveness of prospective cohort studies including patients with GCA lag behind what is available for other rheumatic and musculoskeletal diseases,” Lisa Ehlers, of Charité University Medicine Berlin, and colleagues wrote. “The utility of registry data to inform clinical practice, policy decisions and translational research has been demonstrated, for example, in registries of rheumatoid arthritis.”

“Large collaborative projects from several European biologic registries provided reassuring results regarding risk of melanoma and distribution of lymphoma subtypes in patients with RA following exposure to TNF inhibitors,” the researchers added.

A core data set of 50 items collected from patients with GCA could help physicians make future diagnoses, according to a EULAR recommendation.
Source: Shutterstock

To draft a core set of items that could be easily collected by physicians to allow more collaborative research into GCA, Ehlers and colleagues formed a EULAR task force, including 20 experts in rheumatology, internal medicine and epidemiology, as well as patient representatives. Members discussed items from a previously gathered collection of categories describing GCA status and disease course, and used feedback from those discussions to inform a final consensus in email talks following the meeting.

The task force then conducted a three-round Delphi survey to determine a core set of parameters. Initially, the group considered 117 potential items. These parameters were then grouped into five categories — general information, demographics, GCA-related signs and symptoms, other medical conditions and treatment. The task force then proposed instruments and assessment intervals documenting each item.

The task force produced a list of 50 core data items. According to Ehlers and colleagues, physicians should record this data set in all patients with GCA, thereby facilitating future diagnoses of other patients. The core data items include patient identifiers and visit dates in the general category, while age, sex, weight, height, smoking status, GCA diagnosis and date of diagnosis and onset of symptoms make up the demographics category.

The “GCA-related signs and symptoms” category includes ocular involvement, headache, scalp tenderness, laboratory test results, large vessel involvement, disease activity and other items. Under “other medical events and conditions,” the task force list items including death, stroke, myocardial infarction, diabetes, infection, malignancy and others, while the treatment category includes glucocorticoids, antiplatelet agents and disease-modifying antirheumatic drugs.


“This core set aims for harmonization of the collection process with the aim of enhancing the comparability of clinical care data across national and multinational GCA registries and databases and of facilitating pooled analyses to address clinical research questions,” Ehlers and colleagues wrote. “This standardized and systematic collection of relevant data opens new avenues for collaboration between researchers to improve clinical care.” – by Jason Laday

Disclosure: Ehlers reports no relevant financial disclosures. Please see the study for all other relevant financial disclosures.