Ebola Data Platform open for applications to access data
The Ebola Data Platform is now open for data access applications. The platform currently holds contributed data from >13,500 patients under the authority of governments, ministries, and organisations in Ebola-affected countries, and this number is increasing. Researchers can apply to access the data and use it for research that increases understanding of the disease and address key knowledge gaps to benefit communities affected by Ebola.
The Ebola Data Platform (EDP) is the first global, multi-country data repository for clinical, epidemiological, and laboratory data on Ebola Virus Disease (EVD). To date, data have been aggregated from thousands of individual patient records collected during the 2013–16 West African Ebola outbreak. The Platform aims to reduce the impact of EVD by generating new evidence to improve outbreak response and patient care.
While accessible to researchers worldwide, the initiative promotes the use of data by researchers based in the countries of data origin. As part of this focus, the Platform advocates collaboration and capacity strengthening, to ensure that the knowledge gained from Platform data can benefit those communities. The EDP is led by national, regional, and international public health agencies, Ministries of Health, academia, funders and NGOs from across West Africa and the world which form its Steering Committee.
An independent Data Access Committee (DAC) will consider applications according to its Data Access Guidelines. Membership of this committee includes representatives from the National Ethics Committees of Guinea, Liberia and Sierra Leone, alongside experts in infectious disease research, health statistics and biosecurity.
Professor Issiaka Sombié, Chair of the Ebola Steering Committee and Senior Research Officer at the West Africa Health Organisation says: “We are very pleased that the EDP is at a stage where we are welcoming requests for data access. Conducting research from data collected in this way will assist robust research to advance understanding of EVD, while ensuring that data sharing is equitable for all involved. We strongly encourage researchers to take full use of this platform for their research, particularly those in West Africa where the data originated.”
The EDP would like to invite researchers to read the research agenda, view the data held in the inventory and complete a data access application form. Once submitted, the DAC aims to review and respond to requests within two months. Any questions please contact ebola@iddo.org.
TDR, the Special Programme for Research and Training in Tropical Diseases, is a key partner in the EDP. TDR’s Manager of Research Policy, Robert Terry, was appointed as a representative of the World Health Organization to sit on the EDP Steering Committee and to Chair the EDP Data Access Committee. TDR also partners with IDDO to build research capacity in Ebola-affected countries, promoting use of EDP data by scientists based in the countries of data origin.