Delivering Digital Health Solutions that Patients Need: A Call to Action.

Digital health solutions have the potential to complement traditional healthcare approaches and deliver improved health outcomes, but there are system-wide challenges that need to be addressed. These include fragmentation of the digital health landscape, regulatory processes that lack the agility to accommodate the fast pace of digital health advances, and inadequate transparency around data sharing and data governance. All of these challenges have led to mistrust, limited understanding and sharing of best practices, a lack of digital education and awareness, and insufficient patient and public engagement and involvement.

Recommendations for Improving the Quality of Rare Disease Registries.

Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry.