H3ABioNet provides guidelines on the use of clinical data, data management and data standardization

    Phenotype Data Collection Standards

    In collaboration with the H3Africa Phenotype Harmonisation Working Group, H3ABioNet is establishing common phenotype-specific data collection modules that can be implemented across the African continent (and beyond). These modules incorporate both existing and newly developed phenotype standards, to promote harmonised collection of phenotype data for genomic research. The developed modules are illustrated and available for download below:

    H3ABioNet has built resources for the developed modules in the form of a REDCap Project Template. This offers an XML file which can be uploaded in any data management platform which accepts the format as a complete project incorporating a Data Dictionary with the standardised data definitions and formats for all phenotypes contained in a module. Each module is accompanied by a guidelines document which describes the module and instructions on how to collect data in the module. Finally, selected modules also have an associated .pdf CRF file, which can be used for data collection directly from research participants.The benefits of using these modules are multi-fold:

    1. The modules are all aligned with existing, global data collection standards.
    2. The modules are specifically adapted for biomedical phenotype data collection in Africa.
    3. The modules are highly interoperable, with variables mapped to existing and maintained ontologies.

    The aforementioned data collection tools are further described below, and can also be found on H3ABioNet’s GitHub. In addition, more info on the history and methodology of work, as well as info on how to acknowledge and cite our work can be found in the documentation.

    Core Phenotypes - Standard CRF

    The Core Phenotypes are a recommended set of phenotype data elements broadly applicable across Africa - dubbed the “Std. CRF”.  Data collected with the Std. CRF provides phenotype data complementing the genomic data generated by H3Africa.  The core phenotypes are customised for collection in both adult and pediatric research participants.

    The Std. CRF pdf files can also be downloaded individually and used for on-site data collection:

                  OR, select individual pdf forms from the Std. CRF


    Domain-Specific Modules

    A range of extendable domain-specific modules have been developed and can be used in conjunction with the aforementioned Core Phenotype. These modules can be employed to promote comprehensive and harmonized data collection within specific research domains. These domains include:

    © 2021 H3ABioNet.org
    Terms - Privacy - Policy & Safety - Helpdesk
    The H3ABioNet website content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Health