Diagnosis and Management of von Willebrand Disease in The Netherlands

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

• 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.

• Amphia hospital, Breda: G.J. Goverde, M.H. Jonkers.

• Catharina hospital, Eindhoven: W.J.D. Hofhuis.

• Maxima Medical Center, Eindhoven: M.R. Nijziel.

• University Medical Center Groningen, Groningen: K. Meijer, R.Y.J. Tamminga.

• Kennemer Gasthuis, Haarlem: P.W. van der Linden.

• HagaZiekenhuis, The Hague: P.F. Ypma.

• Leiden University Medical Center, Leiden: J.G. van der Bom, H.C.J. Eikenboom, F.J.W. Smiers.

• Maastricht University Medical Center, Maastricht: B. Granzen, K. Hamulyák.

• 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).