The HemoNED Foundation collaborates with several external parties to develop and maintain the registry and the digital infusion log.
The company Medical Research Data Management (MRDM) is responsible for the ICT infrastructure of the registry and the digital infusion log (app), providing the building, hosting and maintenance. MRDM complies with the NEN7510 and ISO27001 norms with regard to information security and with the EU General Data Protection Regulation (GDPR) with regard to privacy regulations.
The registry has been set up with a two-year grant provided by the Netherlands Organization for Health Research and Development (ZonMw), part of the Ministry of Health, Welfare and Sport.
For long-term continuation of the registry, additional funding will be provided by public-private collaborations with pharmaceutical industries that provide products for patients with hemophilia or associated bleeding disorders. Representatives from each pharmaceutical company form a Sounding board, which receives semiannual reports on the registry. Pharmaceutical companies can apply for anonymized information from the registry for the benefit of their research regarding the safety and effectiveness of the medication they produce. This information is only supplied when the Steering Committee has given a positive decision on the application.
The HemoNED Foundation signed a collaboration agreement with CSL Behring, Pfizer, Bayer, Novo Nordisk, Sobi, Octapharma, Shire and Roche.