You will find...
Phenotypes
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A Phenotype defines how to measure real-world attributes of human health in data
Concepts
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Concepts are individual lists of clinical codes defining a condition, treatment, and so forth
Data Sources
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Data sources are datasets against which phenotypes may be defined - for example, routinely collected health datasets.
Clinical Codes
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Clinical codes are the 'words' in standardized languages used to create electronic health records
Clinical Terminologies
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Clinical Coding Systems are the languages used to capture electronic health records in a standardized format
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What do we do?
The Concept Library is an open source software application enabling researchers to create, document and share definitions and algorithms that are used in health data research. This tool serves as a key enabler to the open research agenda, driving efficient, high quality, and repeatable research.
For example, the FAIR principles state that digital assets used in research should be "Findable, Accessible, Interoperable, and Reusable". The Library implements a solution to those goals within the electronic phenotype space.
Originally developed by the SAIL Databank team, the Concept Library has been adopted as a sharing solution by multiple organizations, including Health Data Research UK. A multi-institutional, interdisciplinary team is responsible for ongoing development.
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Key Principles
The Library stores phenotyping algorithms, metadata and tools only. No data is stored in the Library.
Phenotype definitions will be assigned a unique Digital Object Identifier (DOI) to facilitate identification of the phenotype.
Ideally, phenotypes that are deposited in the Library will have undergone some form of peer-review to assess validity and quality either through peer-reviewed publication or some other means of sharing the definition(s).
Users should cite the Phenotype Library in all publications, presentations and reports as follows: “HDR UK CALIBER Phenotype Library https://portal.caliberresearch.org/”.
All material deposited in the Library remain the intellectual property of the research group who created the phenotype(s) ‐ the default licensing agreement that information is available under is the Creative Commons Attribution 4.0 (CC-A).
The aim of the Library is not to standardize or harmonize disease definitions, therefore several phenotypes may be stored for the same condition and the onus is on individual researchers to explore which phenotypes they wish to use.