New registry regulation template to set up purpose, structure and workflow
This new template offers a comprehensive framework for establishing a health data registry. It covers key aspects such as purpose, governance, data access protocols, and quality management systems, ensuring alignment with ethical and legal principles.
3 February 2025
Together with several other partners, SPHN has helped develop a Registry Regulation Template. The initiative led by swissethics combined expertise of SPHN, the university hospital organization unimedsuisse, the hospital association H+, the cancer research group SAKK, the Swiss Biobanking Platform, Swiss Clinical Trial Organisation, and representatives of the university hospitals of Lausanne, Zürich, Geneva, Basel, and the cantonal hospital St.Gallen.
The purpose of this template is to serve as guidance for the creation and management of health-related registries. The template provides a comprehensive framework addressing key aspects like purpose, governance, data access protocols, and quality management systems, ensuring compliance with ethical principles. Designed for registries intended for quality control, research, or surveillance, the template emphasizes respecting data subjects' rights while managing sensitive information. It is available for download now. For additional support, please don’t hesitate to contact us at info[at]sphn.ch.