The launch of the HemoNED registry in 2016 is a joint initiative of the Dutch Hemophilia Treaters Society (NVHB), a sub-association of the Dutch Haematology Society, and the Netherlands Hemophilia Patient Society (NVHP). All Dutch accredited hemophilia treatment centres partake in the registry. The management of the registry is carried out by the HemoNED Foundation, and its policy is determined by the Steering Committee. The management and organization of the HemoNED registry are described in a Governance document.
The HemoNED Foundation
The HemoNED Foundation is responsible for managing the registry. The Foundation takes care of the overall administration, it delivers reports, guarantees the quality of the registry data and makes contracts with external parties. The three members of the Foundation's Board are representatives from the NVHB and NVHP.
Members of the Foundation Board:
- Chairman: Dr. S.C. Gouw (pediatric hematologist, Amsterdam UMC location AMC)
- Secretary: Dr. M.H.E. Driessens (delegate NVHP)
- Treasurer: Dr. K. Meijer (internist-hematologist, UMC Groningen)
The Steering Committee is responsible for the registry's policy and, in that context, assesses the reports and the applications with regard to the use of registry data. The Steering Committee includes representatives from all accredited hemophilia treatment centres (HTC) in the Netherlands, and a representative from the NVHP and the Dutch Hemophilia Nurses Society (NVHV).
Members of the Steering Committee:
- HTC Amsterdam UMC location AMC: Dr. S.C. Gouw (pediatric hematologist), chair
- HTC Erasmus MC Rotterdam: Dr. M.J.H.A. Kruip (internist-hematologist)
- HTC LUMC Leiden/HagaZiekenhuis The Hague: Dr. P.L. den Exter (internist)
- HTC Radboudumc Nijmegen/MUMC Maastricht /MMC Veldhoven&Eindhoven:
Dr. B.A.P. Laros-van Gorkom (internist-hematologist)
- HTC UMC Groningen: Dr. M.A. Stein-Wit (pediatric hematologist)
- HTC Van Creveld clinic UMC Utrecht: Dr. K. Fischer (pediatric hematologist)
- NVHP: S. Meijer (board member medical affairs NVHP)
- NVHV: M. Beijlevelt (board member NVHV; clinical nurse specialist hematology, Amsterdam UMC)
The Foundation and the Steering Committee are supported by the Project Office. The Office manages the internal and external communications, conducts analyses and prepares reports. Please contact the Office if you have any question about HemoNED.
Members of the Office:
- Project manager: Drs. C.M.E. (Caroline) van Veen (LUMC Leiden)
- Data manager: Dr. E.M. (Liesbeth) Taal (LUMC Leiden)