The IDDO Board, a Scientific Advisory Committee (SAC), independent Data Access Committee (DAC), and the IDDO Secretariat are responsible for the overall functioning and governance of the schistosomiasis and soil-transmitted helminthiases (STHs) platform.
The IDDO Board supports decision-making, approves new initiatives, significant collaborations and has overall responsibility for the strategic direction and activities of IDDO and its Committees.
Schistosomiasis and STHs Scientific Advisory Committee (SAC)
The Scientific Advisory Committee (SAC) advises on technical and research activities and is appointed from across the schistosomiasis and soil-transmitted helminthiases (STHs) and broader scientific research community. SAC members have significant expertise in research, policy and funding and the Chair is also a member of the IDDO Board.
The SAC enriches and informs the work of IDDO by providing independent scientific expertise, guidance and it reviews the research activities and makes recommendations on scientific priorities, activity gaps, and opportunities. It raises awareness of relevant advances in scientific research and global health, and provides feedback and perspectives from wider stakeholders in the scientific community in areas of relevance to the platform.
Individual patient data (IPD) for the schistosomiasis and STHs platform are contributed through engagement with the research community, who submit study data and metadata through IDDO’s secure online web-based portal. In order to ensure the privacy of all data subjects and secure management for responsible data re-use, the schistosomiasis / STHs platform accepts only anonymised patient data.
Data Access Committee (DAC)
An independent Data Access Committee chaired by TDR, the Special Programme for Research and Training in Tropical Diseases, makes objective decisions regarding data access and re-use in accordance with criteria for data access featured in the IDDO Data Access Guidelines. The DAC is responsible for establishing the IDDO terms and conditions for data access, and contains a broad range of expertise, such as ethicists, researchers in diseases across the whole IDDO portfolio, and data sharing experts.
The IDDO Secretariat manages the operational, technical, legal and administrative activities related to hosting the schistosomiasis and STHs platform.