Abstract
The Infectious Diseases Data Observatory (IDDO, https://www.iddo.org) has launched a clinical data platform for the collation, curation, standardisation and reuse of individual participant data (IPD) on treatments for two of the most globally important neglected tropical diseases (NTDs), schistosomiasis (SCH) and soil-transmitted helminthiases (STHs). This initiative aims to harness the power of data-sharing by facilitating collaborative joint analyses of pooled datasets to generate robust evidence on the efficacy and safety of anthelminthic treatment regimens. A crucial component of this endeavour has been the development of a Research Agenda to promote engagement with the SCH and STH research and disease control communities by highlighting key questions that could be tackled using data shared through the IDDO platform. Here, we give a contextual overview of the priority research themes articulated in the Research Agenda-a 'living' document hosted on the IDDO website-and describe the three-stage consultation process behind its development. We also discuss the sustainability and future directions of the platform, emphasising throughout the power and promise of ethical and equitable sharing and reuse of clinical data to support the elimination of NTDs.
Highlights
At least one billion of the world’s poorest people suffer from neglected tropical diseases (NTDs)
The World Health Organization (WHO), supported by global health partners, has spearheaded efforts to eliminate these diseases as a public health problem by 20304, predominantly using a strategy of preventive chemotherapy (PC)
As part of the platform development phase, we have developed a Research Agenda highlighting research questions that could be tackled using data shared through the Infectious Diseases Data Observatory (IDDO) platform
Summary
At least one billion of the world’s poorest people suffer from neglected tropical diseases (NTDs). The Infectious Diseases Data Observatory (IDDO) is working with the SCH and STH research and disease control communities to develop a clinical data platform for the collation, curation, standardisation and reuse of individual participant data (IPD) on treatment responses to anthelmintics. The IDDO platform intends to facilitate the development of a standard case reporting form (CRF) to foster increased standardisation of protocols and reporting for clinical studies on SCH and STHs (Table 1) This will be achieved through engagement with the respective research communities and will be informed by current and future contributions to the platform.
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