Managing registries for expensive drugs

27/01/2022

From 2021-2022 the HemoNED Foundation collaborates with the National Health Care Institute in a project called 'Managing registries for expensive drugs'.

To monitor the use of expensive drugs the National Health Care Institute investigates the use of 'real world data' from patient registries. This is in line with the EMA 'Patient registry initiative'. In the project 'Managing registries for expensive drugs' the National Health Care Institute selected 4 case studies to learn from practice. The HemoNED registry has been selected as the case study for orphan drugs. The case study focuses on quality & quantity of registry data, outcome data (incl. PROMs) and automated data extractions.