WWARN is part of the Infectious Diseases Data Observatory (IDDO), a platform for infectious and emerging disease data sharing. As part of IDDO, WWARN is committed to ethical, open and transparent practices which respect the rights of patients, data owners, investigators, researchers and organisations contributing to the WWARN Data Repository.
To protect the organisations or individuals who share their data with other researchers through WWARN, we have developed an ethical framework setting out what we will and will not do with data entrusted to our care.
WWARN ensures that every contributor retains control of their submitted data as set out in our Terms of Submission. This simple agreement between the data contributor and WWARN explains how submitted data is secured, controlled and used. Data are handled in compliance with the UK Data Protection Act to protect personal information and patient privacy.
The Oxford University Tropical Research Ethics Committee (OxTREC) granted ethical approval to WWARN’s planned data gathering and analysis activities in September 2009. Contributors are required to affirm that all submitted data have been:
- obtained in accordance with any laws and ethical approvals applicable in its country of origin;
- obtained with the knowledge and consent of the individual to which it relates; and,
- anonymised so that any individual to which it relates cannot be identified from it.
With advanced informatics capabilities, security and encryption, the data repository offers a safe location to store data, which may be retrieved at any time by you or your designated collaborators.
Data use by WWARN
In close collaboration with the contributor, WWARN staff transform submitted primary data sets of individual patient or parasite results into a standard format. The original data files, an audit trail of any changes made during curation and transformation, and the resultant data set are all available to the contributor and any individuals nominated by the contributor.
Only brief summary information about an individual study is shown on the WWARN Explorer — never individual patient data. Aggregated data are openly accessible on the WWARN website.
WWARN facilitates collaborative study groups of data contributors conducting pooled analyses of their data to answer specific research questions. Each group develops an authorship plan and members can choose to participate actively as authors, if publication is anticipated. See WWARN Publication Policy.
WWARN may also produce summary regional reports and make these available on the website. Such reports will not focus on individual studies, instead aggregating data from many studies. These reports will acknowledge all contributing studies without identifying individual authors.
Third party data access
The data owner(s) alone may grant access to his/her own standardised data held in the WWARN Data Repository. WWARN will not share study data with any third party without the explicit permission of the data owner(s). Researchers interested in accessing specified datasets should contact the data owner(s). WWARN will facilitate potential collaborations by supplying appropriate contact details.
Publication of studies submitted to the WWARN Data Repository
Contribution to any WWARN or Study Group publication shall be acknowledged in accordance with the guidelines of the International Committee of Medical Journal Editors. For further details and guidance, see the WWARN Publication Policy.
The use of datasets and reports standardised and developed by WWARN shall be acknowledged in accordance with the guidelines of the International Committee of Medical Journal Editors using the following language: “The data presented in X were analysed using tools developed by the WorldWide Antimalarial Resistance Network.” If figures from a WWARN report are used: “Figures are reproduced with the permission of the WorldWide Antimalarial Resistance Network.”
For further information, see the WWARN Publication Policy.
Please contact info [at] wwarn [dot] org, if you have any questions or comments.