Until now, it has not always been possible to compare existing studies effectively due to differing methods of reporting. This new collaboration 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.”
Schistosomiasis and soil transmitted helminthiases (STH) are caused by parasitic worms. Once infected through contaminated water the worms live in the veins of their human host. Infection by STHs (also known as intestinal worms) is through faecal contamination of soil, the worms can then live for years in the human GI tract. The diseases predominantly affect children causing chronic health problems such as malnutrition, abdominal pain, anaemia and stunted growth. The health and economic burden of these diseases is high, often perpetuating a cycle of poverty in the world’s poorest countries.
The World Health Organization’s (WHO) recommended 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.
Martin Walker, Assistant Professor in Epidemiology at the Royal Veterinary College, London Centre for Neglected Tropical Disease Research 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 WWARN in the neglected tropical diseases domain.”
TDR, IDDO and the World Health Organization (WHO) convened two meetings in 2015 and 2018 to consult with stakeholders and experts and inform the development of the data-sharing platform.
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.