Ethics practices associated with reusing health data: an assessment of patient registries.

ABSTRACT:

Background

As routinely collected patient data have become increasingly accessible over the years, more attention has been directed at the ethics of using such data for research. Patient data is often available to researchers through patient registries that typically collect data of patients with a specific condition. While ethical guidelines for using patient data are presented frequently in the literature, it is currently unknown how patient registries implement the recommendations from these guidelines in practice and how they communicate their practices. In this project, we assessed to what extent a sample of 51 patient registries provides information about a range of ethics practices.

Methods

We searched for patient registries in the resource database of the European Ne

SUBMITTER: van den Akker OR 

PROVIDER: S-EPMC11619252 | biostudies-literature | 2024 Dec

REPOSITORIES: biostudies-literature