Organigram
The Swiss ILD Cohort is coordinated through a multi-level governance structure involving the Steering Committee, the Sponsor, the Core Management Team, participating centers, the Swiss Society of Pulmonology (SSP), and the Compliance, Ethics and Scientific Advisory Board (CESAB).
The Core Management Team acts as the operational driving force of the cohort and supports the implementation of Steering Committee decisions, coordination of activities, and day-to-day management.
The Sponsor retains overall regulatory responsibility and ensures compliance with Swiss clinical research regulations. The Sponsor also holds veto rights over decisions that may compromise participant safety, data protection, or regulatory requirements.
The Swiss Society of Pulmonology (SSP) provides institutional support to the cohort, including financial oversight and distribution of funds, and contributes to the overarching governance framework.
The Compliance, Ethics and Scientific Advisory Board (CESAB) provides independent scientific, ethical, and regulatory guidance. It advises on study design, data use, and research priorities, ensuring that all cohort activities meet high scientific standards and ethical principles.
The Steering Committee is the main scientific and strategic governance body of the Swiss ILD Cohort. It includes representatives from the Sponsor and participating centers, representatives from the SSP, with the possibility to involve additional experts and representatives. The Steering Committee defines the strategic direction of the cohort, oversees data access and use, and ensures the quality and integrity of research activities, including the review and approval of research proposals and publications.
Participating centers ensure the operational implementation of the cohort, including patient recruitment, data collection, and quality assurance, and contribute to protocol execution. They play an active role in the evaluation of research proposals.
Data Governance and Data Access
Clinical data and biological samples collected within the Swiss ILD Cohort are managed through a structured, proposal-based access framework designed to ensure scientific quality, ethical compliance, and appropriate use of cohort resources.
Investigators requesting access to cohort data and/or biosamples must submit a research proposal for evaluation by the Steering Committee. Participating centers are involved in this evaluation process and may request reconsideration of proposals when needed.
Approved projects are subsequently validated by the Sponsor in accordance with applicable ethical, legal, and regulatory requirements. The CESAB may provide additional advisory input to ensure scientific rigor and ethical compliance.