ABSTRACT
In the Netherlands, specialized care for patients with a bleeding disorder, including
hemophilia, von Willebrand disease (VWD), and allied disorders, is concentrated in
13 Hemophilia Treatment Centers. The Dutch Hemophilia Treaters Society, the Dutch
Hemophilia Nurses' Society, and the Netherlands Hemophilia Patients Society collaborate
to optimize management of patients with a bleeding disorder. A recently updated consensus
guideline of hemophilia and allied bleeding disorders provide guidance on the current
optimal diagnostic strategy and treatment of VWD. Genetic testing is not routinely
performed in the Netherlands. Desmopressin (DDAVP) is the choice of treatment in VWD
patients responsive to DDAVP, as determined by a test infusion. Coagulation factor
concentrates are used in nonresponsive individuals, in case of a contraindication
for DDAVP, or in type 2B and type 3 VWD. These concentrates are available for all
patients in the Netherlands; however, these may only be administered in a Hemophilia
Treatment Center or under the care of a Hemophilia Treatment Center. Recently a study
on moderate and severe VWD (the Willebrand in Netherlands study) was initiated to
obtain more insight on VWD diagnosis, treatment, and the burden of the disease.
KEYWORDS
von Willebrand disease - Hemophilia Treatment Centers - Willebrand in Netherlands
(WiN) Study
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APPENDIX A WILLEBRAND IN NETHERLANDS STUDY GROUP
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Academic Medical Center, Amsterdam: K. Fijnvandraat, P.W. Kamphuisen.
-
VU University Medical Center, Amsterdam: A. Kors, S. Zweegman.
-
Netherlands Hemophilia Society, Badhoevedorp: M.E.L. Degenaar-Dujardin.
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Amphia hospital, Breda: G.J. Goverde, M.H. Jonkers.
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Catharina hospital, Eindhoven: W.J.D. Hofhuis.
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Maxima Medical Center, Eindhoven: M.R. Nijziel.
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University Medical Center Groningen, Groningen: K. Meijer, R.Y.J. Tamminga.
-
Kennemer Gasthuis, Haarlem: P.W. van der Linden.
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HagaZiekenhuis, The Hague: P.F. Ypma.
-
Leiden University Medical Center, Leiden: J.G. van der Bom, H.C.J. Eikenboom, F.J.W.
Smiers.
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Maastricht University Medical Center, Maastricht: B. Granzen, K. Hamulyák.
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Radboud University Nijmegen Medical Centre, Nijmegen: P. Brons, B.A.P. Laros-van Gorkom,
I. Nováková.
-
Erasmus University Medical Center, Rotterdam: A. de Goede-Bolder, F.W.G. Leebeek (principal
investigator), E.M. de Wee.
-
Van Creveldkliniek and hematology, University Medical Center, Utrecht: E.P. Mauser-Bunschoten
(chair steering committee).
Jeroen EikenboomM.D. Ph.D.
Department of Thrombosis and Hemostasis, Leiden University Medical Center
Room C2-R, PO Box 9600, 2300 RC Leiden, The Netherlands
eMail: H.C.J.Eikenboom@lumc.nl