Ebola virus disease (EVD), formerly known as Ebola haemorrhagic fever, is a severe, often fatal illness in humans. The virus is initially transmitted to people from wild animals and spreads in the human population through person-to-person contact. The first Ebola outbreaks occurred in remote villages in Central Africa, near tropical rainforests, but more recent outbreaks have also included East Africa and major urban centres of West Africa.
The management of Ebola outbreaks relies on strong community engagement in surveillance, suspect case alert and contact tracing. These techniques need to be supported by good laboratory services, isolation treatment centres, safe burial practices and social mobilisation focused on educational programmes and campaigns.
Data on each of these aspects is necessary to track and stop outbreaks as well as to develop an understanding of the disease. By combining the datasets of the many organisations that generate data on Ebola, we can maximise the resources for researchers to produce evidence that reduces Ebola’s impact on patients and communities.
There currently exists a wealth of clinical, laboratory, and epidemiological data that have been collected throughout the history of Ebola virus disease outbreaks, and especially across the three most affected countries during the 2013-2015 outbreak.
Subsets of this information have been analysed to help understand disease progression and the effect of outbreak response activities, but these analyses are often limited by geography, referral patterns or unique conditions that limit the generalisability of the results. Furthermore, the numbers of high-risk patients, such as children, pregnant women and those with co-morbidities, are insufficient within single centres or organisations to draw conclusions within limited populations.
We are establishing the first global data repository for clinical, epidemiological, and laboratory data on EVD, to enable the research community to maximise resources, prioritise research and build on existing knowledge. Scientific advances will be realised only when existing data, analyses and results are shared within the research community, so that each outcome can be used to inform the next.
The technical, governance and ethical framework of this research theme have been designed to promote access to data for research while protecting the rights and privacy of the people and communities from where the data originated.