Accessing data

The Ebola Data Platform is the first multi-country repository of data from individual Ebola virus disease patients. The technical, governance and ethical framework of the Ebola Data Platform ensures the protection of the privacy and interests of the individuals and communities from where the data originated. Researchers can request access to Ebola data held in the repository. The table below shows the data that are currently available for request.

Credit: Simon Davis, DFID
i
Credit: Simon Davis, DFID
14,193

TOTAL INDIVIDUAL PATIENT DATA

4

TOTAL NUMBER OF COUNTRIES

12

TOTAL NUMBER OF INSTITUTIONS

17

TOTAL NUMBER OF DATA CONTRIBUTIONS

Accessing Data

1. How to request data

   - Guinea: Comite d'éthique recherche en santé

    - Liberia: National Research Ethics Board

    - Sierra Leone: Ethics and Scientific Review Committee

    - Nigeria: National Health Research Ethics Committee

 
2. Once a Data Access request has been submitted

The Ebola Data Access Committee (DAC) manages and oversees all data access applications for reuse of Ebola data, in accordance with the Data Access Guidelines and the Data Transfer Agreement. The DAC aims to review applications and respond to requests within two months of submission. The Data Access Guidelines detail our principles of data access, who can request data and how the DAC operates. The DAC operates under the Terms of Reference.

The technical, governance and ethical framework for our data access strategy has been developed to promote access to data for research, while protecting the rights and privacy of the people and communities from which the data originate, and respecting the investment of the researchers who conducted the studies and collected the data.

While the DAC can provisionally approve an application to access data, transfer of data cannot take place until all relevant ethics approvals have been received from the relevant national ethics committees.

Contact us at EbolaDAC@iddo.org if you have any questions or would like further support.


The table below shows a summary of the data held in the Ebola Data Platform as of January 2020, see EDP Data Inventory for more detail 

 
 

Contributing organisation

Country City/Town/Village of Centre

Data source 

Number of patient records
1 Médecins Sans Frontières (MSF) Liberia Foya MSF Foya Ebola Treatment Centre 870
2 Médecins Sans Frontières (MSF)

Liberia

Monrovia MSF ELWA3 Ebola Treatment Centre  1907
3

Médecins Sans Frontières (MSF)

Guinea

Guéckédou

MSF Guéckédou Ebola Treatment Centre  2500
Médecins Sans Frontières (MSF) Guinea Donka MSF Donka Hospital Ebola Treatment Centre  2301
5 Médecins Sans Frontières (MSF) Sierra Leone Freetown MSF Prince of Wales Ebola Treatment Centre 171
6 Médecins Sans Frontières (MSF) Sierra Leone Bo MSF Bo Town Ebola Treatment Centre 524
7 Médecins Sans Frontières (MSF) Sierra Leone Kailahun MSF Kailahun Ebola Treatment Centre 1219
8 Médecins Sans Frontières (MSF) Sierra Leone Magburaka MSF Magburaka Ebola Treatment Centre 159
9 International Medical Corps (IMC) Liberia Bong IMC Bong Ebola Treatment Centre  550
10 International Medical Corps (IMC) Sierra Leone Port Loko IMC Lunsar Ebola Treatment Centre   549
11 International Medical Corps (IMC) Liberia  Margibi  IMC Margibi Ebola Treatment Centre  292
12 International Medical Corps (IMC) Sierra Leone Kambia IMC Kambia Ebola Treatment Centre  273
13 International Medical Corps (IMC)  Sierra Leone Makeni IMC Makeni Ebola Treatment Centre  1075
14 Alliance for International Medical Action (ALIMA) Guinea Nzérékoré ALIMA Nzérékoré Ebola Treatment Centre  147 
15 Oxford University  Sierra Leone Port Loko Clinical trial  35
16 Oxford University  Liberia Monrovia Clinical trial  4
17 Save the Children  Sierra Leone Kerry Town SCI Kerry Town Ebola Treatment Centre  456
18 Institute of Tropical Medicine Antwerp (ITM) Guinea Donka  Clinical trial  520
        Total number of patient records 13,552