9 January 2024
The Dutch National Healthcare Institute (“Zorginstituut Nederland”) has made additional funding available for a 4-year collaboration on the (further) development of international patient registries for rare diseases. This is good news, because with this public financing we can guarantee the continuity and independence of the MLDi register in the coming years. We can now fill the register even further with international data. Together with the Dutch Healthcare Institute, we work on maximizing the impact of patient registries. We are working on registries that can help overcome the challenges associated with introducing innovative treatments. These treatments are often promising but expensive, and sometimes there are uncertainties about their efficacy or safety. Registries collecting real-world data on long-term safety and effectiveness are valuable. In recent years The MLD initiative has participated as a case study in the “Managing Patient Registries for Expensive Drugs” (“Regie op Registers voor dure geneesmiddelen”) program of the Dutch Healthcare Institute and we look forward to our extended collaboration in the coming years!
More information about the program Managing Patient Registries for Expensive Drugs can be found in the final report: https://english.zorginstituutnederland.nl/publications/reports/2023/11/30/final-report-case-study-phase-ror-dgm