O. R. van den Akker

Communicating Ethically Relevant Practices of Patient Registries: An Interview Study on the Information Needs of People with Multiple Sclerosis

Patient registries play a key role in research on chronic conditions like multiple sclerosis (MS), but their success typically depends on patients' willingness to share data. Information provided about ethically relevant registry practices may strongly influence their willingness. This study explores what information a...