On a regular basis, new and innovative medicines come to the market; with uncertainties surrounding their exact effect in patients. To address these uncertainties, disease-specific registries are commonly being used. The Dutch National Health Care Institute (Zorginstituut Netherland [ZIN]) started, in collaboration with stakeholders, a national program on the management and coordination of disease-specific registries. The main goal is to improve the quality and consistency of these registries and thereby increase the value of the data in monitoring innovative, expensive medicines. As a starting point for this program, we performed a study on the current state of these registries in the Netherlands.

Using an initial list of 114 registries, we sent out questionnaires to 58 disease-specific registries that collected information on medicine use. Thirty registries responded and their registries were used for the analysis.

Of 30 registries that responded, 15 registries collect information on orphan medicinal products. Most registries are in the field of internal medicine (n = 8), oncology (n = 6), and rheumatology (n = 5). The size of the registries ranged between 250 patients (orphan diseases) and more than 10,000 patients (oncology). Only 13 registries collect information on patient reported outcomes. Data collection is mostly performed manually and standard coding systems such as Systemized Nomenclature of Medicine (SNOMED), Logical Observation Identifiers, Names, and Codes (LOINC), and The International Classification of Diseases 10th Revision (ICD-10) are not routinely used. Finally, our results show that most registries are (partly) dependent on the funding of pharmaceutical companies.

Our assessment shows variation in the type, goal of, governance, and funding of the disease-specific registries investigated. We believe that these results show the importance of further national coordination of the disease-specific registries to increase the usability of their data to address the uncertainties surrounding these innovative, expensive medicines.