ISARIC and ISARIC's partners and collaborators have developed a number of data tools to support clinical research and data collection during and following the Ebola outbreak in West Africa, all of which are freely available for download and adaption below. The most recently updated tools are the EVD Survivor Data Collection Tool developed by ESHealth34, which have been designed for patient flow and clinical utility in documenting Post Ebola Syndrome. The ESHealth34 tools can be used for non-Ebola survivors as a comparative group as well.
The other three forms (e.g. Ebola virus disease Core Dataset Case Record Forms, EVD Infection Modules, and EVD Post-Infection Modules) are modules that were developed during and after the Ebola outbreak, and intend to collect clinically relevant information to support the work of health care providers and informing an understanding of Ebola virus disease. These forms lay the foundation for the IDDO Ebola data platform, which you can access here.
ESHealth34 is a Clinical Information Collection Tool. It is a set of data collection modules, developed for documenting Post Ebola Syndrome with the input from many different organisations and individuals. It built upon the EVD Post-Infection Modules (the EVD Survivor CRF) above, redesigned for patient flow and clinical utility. and built upon the post Ebola data tools. Use of these modules will support clinics to collect the most relevant clinical data in harmonized structures so that data and information on EVD sequelae and outcomes can be compared and collated across centres. Please download the modules here: Initial Assessment, Co-morbidities/clinical history interview guide, Nurse led initial modules assessment, Follow-up assessment, Nurse led follow-up modules assessment, Follow on sheet (PDFs)
This collection of data capture modules was developed by a collaboration of experts, coordinated through the World Health Organization (link is external) (WHO), the International Severe Acute Respiratory and Emerging Infection Consortium (link is external) (ISARIC), and the Infectious Diseases Data Observatory (link is external) (IDDO) .
A focused set of critical data variables and core outcome measures which should be included in all patient management records and clinical research datasets for patients with active EVD infection. Collecting these data variables for all patients during EVD infection, treatment and research participation will deliver harmonized data which can easily be aggregated, tabulated and analysed across many different settings globally. A copy of the EVD Infection Module CRF is also available with CDISC (link is external) annotation for the use of database programmers to align their terminology and structures with international standards and facilitate pooling of datasets where appropriate.
A set of data collection modules developed by survivor clinics in West Africa. Use of these modules will support clinics to collect the most relevant clinical data in harmonized structures so that data and information on EVD sequelae and outcomes can be compared and collated across centres.