New schistosomiasis and STHs data sharing platform launched

05 Mar 2019
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A new global platform to facilitate and improve data re-use to strengthen schistosomiasis and soil transmitted helminths research has been launched by the Infectious Diseases Data Observatory (IDDO). In partnership with the Special Programme for Research and Training in Tropical Diseases(TDR) and with technical input from LCNTDR members, this global collaboration aims to expand data sharing to accelerate advances in the treatment and control of diseases which affect more than a billion people globally. 

Until now, it has not always been possible to compare existing studies effectively due to differing methods of reporting. The new platform will address this gap by standardising and pooling individual-patient data; prioritising research questions; and facilitating complex meta-analyses to generate evidence on the efficacy of existing medicines to inform the development of new ones and advance understanding of the diseases.

John Reeder, TDR Director said: “The sharing and standardisation of data from clinical trials is very valuable in making the analysis of schistosomiasis and STH treatment outcomes more meaningful and consistent. We welcome further contributions from researchers to expand this data platform and support the disease control effort.”

The World Health Organization’s (WHO) recommended control strategy is the regular mass distribution of medicines to affected communities. However, the effectiveness of this vast control effort could be at risk due to changes in parasite ecology, natural immunity, and resistance to the current antimicrobial medicines. With hundreds of millions of people given medicines for these conditions every year, it is vital to ensure ongoing, effective treatments.

The IDDO is a scientifically independent, multi-disciplinary coalition of the global infectious disease community. It provides the methods, governance and infrastructure to translate data into evidence that improves outcomes for patients’ worldwide, accelerating better treatment and control of poverty-related infectious diseases. This initiative builds on the work of the WorldWide Antimalarial Resistance Network (WWARN), a collaborative data-sharing framework that proved it was possible to produce policy-changing scientific evidence from historical data.

Martin Walker, Assistant Professor in Epidemiology at the Royal Veterinary College, and scientific lead on the platform said: “We want the platform to be a hub that facilitates collaboration and data sharing among researchers and stakeholders in the schistosomiasis and STH communities. We are sure that we can emulate the successes of the WWARN in the neglected tropical diseases domain.”

IDDO has integrated robust technical and statistical solutions to ensure the security and anonymity of data to maintaining participant privacy and confidentiality. Only anonymised data are shared to the data platform and these are verified to ensure compliance with the HIPAA Safe Harbor process. A Data Access Committee (DAC), chaired by TDR and a group of public health independent representatives, manages external access to data.

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