HemoNED positive national assessment

19/03/2024

HemoNED has received unanimous positive advice for inclusion in the national register for quality registrations. This is an important milestone for patients, healthcare providers and researchers involved in the care of people with hemophilia and associated disorders.

HemoNED has received unanimous positive advice for inclusion in the national register for quality registrations. This is an important milestone for patients, healthcare providers and researchers involved in the care of people with hemophilia and associated disorders.Positive advice was issued by two independent assessment committees, the Content Governance Committee (IGC) and the Data Governance Committee (DGC). The IGC assesses how the quality registry compiles and evaluates the dataset, including the involvement of professional and patient associations. The DGC focuses on testing the data management process.

This positive assessment is the first step for  HemoNED  to be included in the national Register for Quality Registrations for 5 years. This national register will come into effect once the new Healthcare Quality, Complaints and Disputes Act (Wkkgz) has been approved. The expectation is now as of January 1, 2025. The law ensures that positively tested registrations are given a legal basis for processing pseudonymised data in the context of quality improvement. This makes it unnecessary to separately request permission from patients for the processing of this data. In addition, the law will ensure better national coordination of the governance of quality registrations and reduce the associated administrative burden. It also obliges healthcare providers to participate in registrations within the quality register, with which the objectives of quality improvement can be achieved. Registrations that are included in the register can count on financing and support.

This positive advice indicates the professionalism of the HemoNed registry and recognizes the value of HemoNED as an essential instrument for monitoring and improving patient care in the field of hemophilia and associated disorders.