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Glossary of PhenX Terms and Acronyms

PhenX Term Definition
Additional Relevant Protocols When viewing a Domain or Collection page, a list of Additional Relevant Protocols may be included in the left panel. Identified by the Working Groups of domain experts, these protocols reside elsewhere in the Toolkit but are pertinent to the listed domain or collection and therefore may be useful for some investigators and study designs.
Advanced Search A tool for searching PhenX Toolkit protocols. The tool offers a high specificity search option (Smart Search) and a high sensitivity search option (Text Search) as well as the option to filter on selected attributes of the protocols, such as mode of administration or lifestage.
Back-compatibility When a protocol is updated or replaced, the back-compatibility of the new/updated protocol with the previous protocol is assessed. The three categories are: "back-compatible," "partially back-compatible," and "not back-compatible."
Collection, Core A Core collection includes measurement protocols that are deemed relevant for all studies in a specific topic or field of research to ensure collection of comparable data across studies.
Collection, Specialty A Specialty collection provides in-depth assessments in a specific topic or field of research.
Common Data Element A CDE is a combination of a precisely defined question (variable) paired with a specified set of responses to the question that is common to multiple datasets or used across different studies.
  • Sheehan J, Hirschfeld S, Foster E, Ghitza U, Goetz K, Karpinski J, Lang L, Moser RP, Odenkirchen J, Reeves D, Rubinstein Y, Werner E, Huerta M. Improving the value of clinical research through the use of Common Data Elements. Clin Trials. 2016 Dec;13(6):671-676. doi: 10.1177/1740774516653238. Epub 2016 Jun 15. PMID: 27311638; PMCID: PMC5133155.
    Data Collection Worksheet (DCW) The DCW identifies each data and metadata item to be collected as required by the protocol. The DCW is provided as an MS Word document to facilitate easy integration into existing study documentation.
    Data Dictionary (DD) The DD lists each variable collected by a protocol data collection worksheet (DCW) and its attributes. DDs are available in three formats: 1) RTF format captures skip patterns commonly used in epidemiologic studies; 2) CSV format is compatible with the database of Genotypes and Phenotypes (dbGaP) data submission packet; 3) REDCap ZIP file format is suitable for upload to studies being implemented in REDCap.
    Derived Variable A variable that can be calculated based on data collected using multiple protocols. For example, Body Mass Index (BMI) is a derived variable that takes into account height and weight.
    Domain A field of research or topic with a unifying theme, which may be a research area, disease, or condition, and with easily enumerated quantitative or qualitative measures. Examples include Demographics, Anthropometrics, Environmental Exposures, Pregnancy, Cancer, and Genomic Medicine Implementation.
    Essential Protocols PhenX protocols that generate data required to accurately interpret the results of another protocol. For example, age is essential to interpreting a person’s height or weight.
    Expert Review Panel (ERP) A group of experts convened to make sure the content in the Toolkit remains highly relevant and useful to the scientific community and reflective of current science. All ERP recommendations must be approved by the PhenX Steering Committee (SC).
    Lifestage The general developmental period for which a specific measurement protocol has been used with human participants.
    Link Your Study A collaborative opportunity for registered PhenX Toolkit users to share research study design information with other users of the PhenX Toolkit. Users can find other linked studies using the same protocols to identify opportunities for cross-study analysis.
    PhenX PhenX is pronounced "phoenix" and stands for "consensus measures for Phenotypes and eXposures."
    PhenX Liaison Liaisons from National Institutes of Health (NIH) Institutes, Offices and Centers and other government agencies are invited to lend their expertise to the PhenX consensus process.
    PhenX Measure A standard way of capturing data on a certain characteristic of, or relating to, a study subject.
    PhenX Protocol A standard data collection procedure, recommended by a PhenX Working Group. Also referred to as a "measurement protocol".
    PhenX Related Protocols Protocols which are conceptually related, and curated by the Working Group members. Related protocols are suggestions only.
    PhenX Toolkit The PhenX Toolkit is a Web-based catalog of recommended measurement protocols suitable for data collection involving human research participants.
    PhenX Working Group (WG) Using a consensus process, PhenX WGs review and identify well-established protocols to recommend for inclusion in the PhenX Toolkit. All WG recommendations must be approved by the PhenX Steering Committee (SC).
    Protocol Availability
    • "Available": The Toolkit provides the data collection worksheet (DCW) for the protocol.
    • "Limited Availability": Users must go to a source outside the Toolkit to obtain the protocol.
    Protocol Status
    • "Replaced": A new protocol from a different source than the original protocol.
    • "Retired": A protocol no longer recommended for use.
    • "Updated": A more current version of the protocol from the same source or with minor edits.
    • "Archived": A retired, replaced or updated protocol. An archived protocol may be viewed, but is no longer recommended for use and cannot be added to "My Toolkit."
    Registered User After registering to become a My Toolkit user, users can access features such as the ability to name and save multiple Toolkits and share them with collaborators. Users can also opt in to receive the PhenX Toolkit Newsletter and submit new studies through the Link Your Study feature. Registration is optional for users of the PhenX Toolkit.
    Scope A preliminary list of elements that provides the framework for identifying measurement protocols that become the content of a domain or collection. Developed by the PhenX Steering Committee or a PhenX Research Panel, a scope is guidance which the Working Group may adapt as needed. Not all scope elements may be addressed, as an element may already be covered in the Toolkit, no suitable protocol exists or no protocol exists at all.
    Selection Criteria for PhenX Protocols The PhenX Steering Committee (SC) defined the criteria for inclusion of protocols in the PhenX Toolkit. The criteria are: clearly defined, well established, broadly applicable, validated, reproducible, specific, reliable, and standard measurement protocols exist.
    Steering Committee (SC) The PhenX Steering Committee (SC) provides overarching guidance to the PhenX project.
    Supplemental Information Supplemental Information includes protocols that the Working Group (WG) or Expert Review Panel (ERP) had a compelling reason to share, but did not meet the criteria for inclusion in the Toolkit.
    Well-established Protocol A well-established protocol is readily accepted and recognized by researchers within a given area of expertise or field of research. It has been published or included in a well-established study with ongoing validation (e.g., NHANES, Framingham).
    Acronyms
    Acronym Meaning
    caDSR Cancer Data Standards Registry and Repository
    CDE Common Data Element
    DCW Data Collection Worksheet
    DD Data Dictionary
    ERP Expert Review Panel
    FOA Funding Opportunity Announcement
    GWAS Genome-wide association studies
    HPO Human Phenotype Ontology
    LOINC Logical Observation Identifiers Names and Codes
    MeSH Medical Subject Headings
    PhenX Consensus measures for Phenotypes and eXposures
    REDCap Research Electronic Data Capture
    SC Steering Committee
    WG Working Group