For the patient community
The IDDO Ebola data platform is a library of data from patients infected with Ebola. All personal information are removed from the data so that no one can tell who the data comes from. The types of data in the library include information on symptoms of the disease, treatments used and laboratory tests. The data will be made available for researchers so that they can find better treatments, diagnose the disease more quickly and accurately, and improve the outcomes of future Ebola patients.
Why do we need an Ebola data platform?
We still do not know enough about how to treat patients with Ebola effectively. To understand this, more research is needed, and good research needs a lot of data. The more data there are for researchers to study, the more accurate their results will be. This Platform ensures that data are securely stored so that researchers can access it to answer new scientific research questions about Ebola now and in the future to address emerging research priorities.
Can anyone be identified by their data?
If you have been infected with Ebola, data about your illness may be included in this library. However, when data are submitted to the Platform all personal information is removed so that there are no details that can be used to find out who the data belong to. No personal information will ever be shared with researchers.
How can I ask for data about me to be removed?
Though the Ebola Data Platform does not have any of your personal information, we respect your right to remove any data about you from the Platform. If you wish to do this, we will contact the organisation that submitted the data and ask them to check the original datasets that may have other information to identify which data are about you. To request that your information be removed, check the list of contributing organisations and treatment centres. If you were admitted to one of these treatment centres, please write to us at ebola@iddo.org to request removal of your data.
Can I provide feedback to the Ebola Data Platform?
The communities from which the data originate are central to the work of the Ebola Data Platform. The knowledge and experiences of individuals in communities that have been affected by Ebola are vital and valued. As a result, efforts are taken to both inform and receive feedback from these communities. You are always welcome to get in touch with feedback or questions via ebola@iddo.org.