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Journal article
International opinion survey on nomenclature for platelet-type von Willebrand disease: communication from the SSC of the ISTH
Journal of thrombosis and haemostasis, Vol.23(11), pp.3704-3710
2025
PMID: 40328428
Abstract
Background The nomenclature for platelet-type von Willebrand disease (PT-VWD) remains an open debate, with several proposed names in use in the literature for this rare inherited platelet disorder. It has been suggested that this name may lead to delays in diagnosis since the diagnostic pathway of patients often starts with von Willebrand factor assays, while the disorder is due to pathogenic gain-of-function (GOF) variants in the platelet GP1BA . Objectives This joint International Society on Thrombosis and Haemostasis (ISTH) Subcommittees’ project aimed to engage with the international community on the disease’s nomenclature. Methods A working group, established under the auspices of 3 Subcommittees, explored issues around nomenclature and proposed possible names with input from a panel of 6 global experts. Two rounds of surveys were administered online via ISTH REDCap and My ISTH Community. Results The 4 names, GPIBA GOF disorder, PT-VWD, glycoprotein Ibα GOF disorder, and PT-pseudo VWD, were selected in the first survey round by 40% to 60% of participants. The first 2 were the top choices and showed almost equal support (28% and 24%, respectively). A second focused round did not generate consensus for name change. Conclusion Based on the survey results, the decision was in support of retention of the more commonly used nomenclature (PT-VWD). More work is needed to ensure this name is adopted universally and in all current online databases to achieve consistency.
Details
- Title
- International opinion survey on nomenclature for platelet-type von Willebrand disease: communication from the SSC of the ISTH
- Authors/Creators
- Maha Othman - Queen's UniversityMichelle Lavin - National University of IrelandRenhao Li - Children's Healthcare of AtlantaAbdelrahman Elsebaie - Queen's UniversityRoss Baker - Royal College of Surgeons in IrelandMarie Lordkipanidzé - Montreal Heart InstituteKathleen Freson - KU LeuvenPaolo Gresele - University of PerugiaHarvey Weiss - University of PerugiaJohnathan Miller - University of PerugiaHoyu Takahashi - University of PerugiaJose Lopez - University of PerugiaFrançois Lanza - University of PerugiaJerry Ware - University of PerugiaPaquita Nurden - University of PerugiaAnalia Sánchez Luceros - University of PerugiaSuchitra Acharya - University of PerugiaShirin Ravanbod - University of PerugiaWill Lester - University of PerugiaGillian Lowe - University of PerugiaJecko Thachil - University of PerugiaSaid Enayat - University of PerugiaEmmanuel Favaloro - University of PerugiaEXPERT collaborators
- Publication Details
- Journal of thrombosis and haemostasis, Vol.23(11), pp.3704-3710
- Publisher
- Elsevier
- Number of pages
- 7
- Grant note
- VWF
- Identifiers
- 991005883920907891
- Copyright
- © 2025 The Authors.
- Murdoch Affiliation
- Centre for Molecular Medicine and Innovative Therapeutics
- Language
- English
- Resource Type
- Journal article
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