Standardized Interoperable Data Collection for Myositis Research: Developing Expert Consensus on Common Data Elements for Myositis Outcome Measures
Authors' conclusion
Leveraging multispecialty expertise in myositis and its patient communities and data science expertise of the National Library of Medicine, the first myositis-specific CDEs have been developed to accelerate the ability to conduct interoperable myositis clinical studies and therapeutic trials.
Study context
- Population
- International expert myositis panel; data dictionaries of myositis registries
- Outcome
- Myositis CDEs created with consensus
Methodological detailsDelphi technique, modified nominal group technique, international expert panel, two phases, Linked data Modeling Language (open-source framework) used to develop computable Common Data Elements (CDEs)
- Delphi technique
- Modified nominal group technique
- International expert panel
- Two phases
- Linked data Modeling Language (open-source framework) used to develop computable CDEs
Recommendations
As reported in the abstract
CDEs drafted for myositis core set measures (CSMs)
10
CDEs for additional measures discussed at second consensus conference
18
New CDEs created for 27 myositis forms, achieving consensus
852
Original publication
Standardized Interoperable Data Collection for Myositis Research: Developing Expert Consensus on Common Data Elements for Myositis Outcome Measures. Arthritis Care Res (Hoboken). Published 14 April 2026. doi:10.
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