For all patients participating in the NECESSITY trial, the trial sponsor, AP-HP, provides a Transparency Portal to inform patients about how their health data collected during care or clinical research may be reused for scientific studies. This portal aims to ensure transparency by presenting ongoing research projects that use data from the AP-HP Health Data Warehouse or other clinical research sources.
Through this portal, patients can learn how their data contribute to medical research and innovation while remaining protected under strict ethical and regulatory frameworks, including the General Data Protection Regulation (GDPR). The portal also explains patients’ rights and allows them to exercise their right to object if they do not wish their data to be reused for research purposes.
Currently, this website is available only in French (an English version is in preparation). If you would like to learn more when visiting the page, you can use your web browser’s translation function (for example in Google Chrome) to translate it into your preferred language.
