Ebola and other Filoviruses
Ebola Data Tools
ISARIC and ISARIC’s partners and collaborators have developed several data tools to support clinical research and data collection during and following Ebola outbreaks, all of which are freely available for download and adaption below.
Ebola Infection Data Forms
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 treatment and research participation will deliver harmonized data which can easily be aggregated, tabulated and analysed across many different settings globally.
These tools were developed by a collaboration of experts, coordinated through the World Health Organization (WHO), the International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC), and the Infectious Diseases Data Observatory (IDDO).
Download the Ebola Infection Data Form.
Ebola Infection Data Forms with CDASH Annotation
A copy of the Ebola Infection Data Forms with CDASH annotation for the use of database programmers to align their terminology and structures with international standards and facilitate pooling of datasets where appropriate (see below). Developed with the support of the Clinical Data Interchange Standards Consortium (CDISC). For full details of CDISC-compliant Ebola data standards, see the CDISC Ebola Therapeutic Area User Guide.
Download the Ebola Infection Data Forms with CDASH Annotation.
Ebola Post-Infection Data Forms
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 centers.
These tools were developed by a collaboration of experts, coordinated through the World Health Organization (WHO), the International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC), and the Infectious Diseases Data Observatory (IDDO).
Download the Ebola Post-Infection Data Form.
EVD Survivor – The ESHealth34 Data Collection Tool
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 Ebola Post-Infection Modules above, redesigned for patient flow and clinical utility. 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 centers.
Please download the modules here:
Initial Assessment
Co-morbidities/clinical history interview guid
Nurse led initial modules assessment
Follow-up assessment
Nurse led follow-up modules assessment
Follow on sheet
Removing barriers
Stigma is a recognised barrier to outbreak control due to its impact on healthcare seeking. It is also known to have negative effects on the psychological, social, and physical well-being of affected people. The importance of addressing stigma during outbreak response is outlined in this publication.
Stigma scales measure the amount of stigma in a community. They are used routinely for diseases such as HIV, but there is currently no cross-culturally validated and widely used tool for measuring stigma associated with infectious disease outbreaks, including Ebola. We are in the process of developing a global cross-outbreak stigma survey in collaboration with a Ugandan NGO – WALIMU – and affected community members in Entebbe, Mubende, and Kassanda, Uganda.
A systematic review of scales for measuring outbreak-related stigma (including Ebola stigma) and their psychometric properties is available here.
Publications
News
The modern landscape of Ebola disease
In this series in The Lancet Infectious Diseases on the modern landscape of Ebola disease, we reflect on the 10-year anniversary of the west Africa (2014–16) epidemic and provide an overview of the progress made since then in improving clinical care for patients with Ebola disease. The first series paper focuses on advances in the understanding of the epidemiology and clinical manifestations of Ebola disease, along with developments in treatment and vaccines, care in special populations, ...
Ebola_CP Trial: First plasma donated by survivors in Sierra Leone
First Ebola survivors in Sierra Leone have donated plasma within the Ebola_CP trial led by Calum Semple (ISARIC WG2 Chair) and a team of scientists at the University of Liverpool and the College of Medicine and Allied Health Services, in Sierra Leone.
Activities
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