WWARN has developed a legal and ethical framework to protect the rights of the data owners and contributors to the WWARN Data Repository, and of those individuals and communities who are the subject of the research.

Ethical Framework

The Oxford University Tropical Research Ethics Committee has granted ethical approval to WWARN’s planned data gathering and analysis activities. All WWARN sub-grantees have also received ethical clearance from their relevant Ethical Review Boards. Data contributors must affirm that ethical approval for a study was obtained from the appropriate authorities prior to submitting data to WWARN (see Terms of Submission). Data provided to WWARN will be handled in compliance with the principles of Data Protection to protect personal information and patient privacy.

The Terms of Submission

The measures WWARN will take to secure an individual’s data, how we will ensure that the contributor retains control of the submitted data and its use, and how WWARN will use that data, are all set out in the Terms of Submission, a simple agreement between the data contributor and WWARN.

Data security and access

To facilitate pooling and comparison of data sets from studies conducted in different times and places, we ask data contributors to share data from individual patients or parasite isolates.

WWARN staff work with each contributor to transform their data into a common format. The original data files, an audit trail of any changes made during curation and transformation, and the resultant data set will all be 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 will be openly accessible on the WWARN website. A contributor will have the option to allow display of a more detailed study summary, but this will require specific permission from the contributor.

Data use by WWARN

The common format of the archived data sets will facilitate appropriate pooling of submitted data into sets of sufficient size to detect statistically significant, subtle trends and correlations not otherwise seen from individual studies. In addition, merging data will allow comparisons between data sets collected at different times and places, and put individual studies in context of the spatial and temporal patterns of changes in drug efficacy.

Reports and analyses created by WWARN may be published or otherwise made publicly accessible, including through the WWARN website. Such reports will not focus on individual studies, instead aggregating data from many studies to produce the WWARN summary reports. WWARN reports will acknowledge all contributing studies without identifying individual authors. WWARN may convene ad hoc, collaborative working groups of certain data contributors to conduct analyses of specific scientific questions. For example, the pharmacokinetic analysis of pooled data on a specific drug, or the efficacy of a drug in a specific sub-population of patients might warrant such a specialized analysis. All contributors whose studies are included would have the option to join the working group and if publication is anticipated, the working group would determine authorship.  For further details, see the WWARN Publication Policy.

Third party data access

As described in the Terms of Submission, WWARN will not share contributed study data with any third party without the explicit permission of the data owner(s).  Third parties who are interested in accessing specified datasets in the WWARN Data Repository should contact the data owner(s) to request such information. WWARN will facilitate such potential collaborations by supplying appropriate contact details. The data owner(s) may grant third party access to his/her own standardized datasets held in the WWARN Data Repository using the WWARN Data Contribution Portal “Permissions” tab.

WWARN encourages researchers, who share summary study results with the wider malaria community through the WWARN project, to form Study Groups of data owners collaborating on pooled analyses of their submitted datasets. The WWARN standardized datasets and reports provided to data contributors taking part in a Study Group facilitate data sharing and comparison. The Study Group shall set its own terms of reference and methodology for analysis and reporting. The use of datasets and reports standardized and developed by WWARN by a Study Group shall be acknowledged in accordance with the guidelines of the International Committee of Medical Journal Editors - see WWARN Publication Policy.

Publication of studies submitted to the WWARN Data Repository

Contribution to any WWARN publication will be acknowledged in accordance with the guidelines of the International Committee of Medical Journal Editors.

Submitting data to WWARN does not affect a researcher’s right to publish those data, which may be done without consent from, or reference to WWARN. The aggregated data displayed on WWARN Explorer are far more limited than the description and analysis of a completed study, and do not constitute prior publication.

Data relating to antimalarial drug resistance is only useful to those involved in the treatment of malaria if it is up-to-date and, for that reason, WWARN strongly encourages data submission before publication. Public display of any such data could be held, under embargo, until permission is received from the data contributor to make summary results available through WWARN Explorer. In some cases, contributors may be asked to allow their data set to be included in a larger pooled analysis that focuses on overall trends in drug efficacy.

For further details and guidance, see the WWARN Publication Policy.

Acknowledging WWARN 

The use of datasets and reports standardized and developed by WWARN shall be acknowledged in accordance with the guidelines of the International Committee of Medical Journal Editors using the following form of words:

The data presented in X was analysed using tools developed by the WorldWide Antimalarial Resistance Network. Figures are reproduced with the permission of the WorldWide Antimalarial Resistance Network.

For further information, see the WWARN Publication Policy.

Please contact info@wwarn.org, if you have any questions or comments.