UPDATE: March 2018. The combination of two mutations: one in the VWF gene causing type 2B VWD and another in the platelet GP1BA gene causing a PT-VWD phenotype has been reported. Thromb Haemost. 2016 Sep 29;116(5) Read the summary here . An abstract about another combination (with the same PT-VWD mutation) was found in 2011. http://www.bloodjournal.org/content/118/21/5313
May 2106. An overview, progress and update on the research work and collaborative world wide efforts since 2007 is now published in the Journal of Thrombosis and Haemostasis, 14: 411–414. Click here to read the full article
May 10th 2015. An invitation for physicians and specialists caring for PT-VWD patients to participate in an international survey to help generate an evidence-based diagnosis and management for PT-VWD. For details, click here
Jan 31st 2014. A new non- previously reported mutation within VWF binding region of GP1BA gene is now reported in a patient diagnosed with PT-VWD in Argentina. The patient had severe bleeding symptoms, macrothrombocytopenia, mild spontaneous platelet aggregation, positive RIPA at 0.3 and 0.4 mg/mL, VWF:RCo to VWF:Ag ratio < 0.2, normal VWF propeptide/VWF:Ag ratio, and RIPA […]
July 27 2012 Click here for an update http://c.ymcdn.com/sites/www.isth.org/resource/resmgr/yearly_subcommittee_minutes/2012_minutes.pdf
Aug 16 2011 Click here for an update http://www.isth.org/default/index.cfm/ssc1/2011-ssc-subcommittee-minutes/2011-von-willebrand-factor-minutes/
April 8th 2011 Dear patients, clinicans, specialists, scientists and technologists with interest/ experience in PT-VWD: a forum has just been created on the site to act as a venue to exchange experiences and discuss all matter related to this bleeding disorder. Please register and offer your support by sharing yourknowledge and experience with PT-VWD
Feb 9th 2011 PT-VWD project detailed results are now online: Thrombosis and Hameostasis prepublished February 08, 2011 Frequency of Platelet type versus Type 2B von Willebrand Disease: An international registry-based study. A. Hamilton (1), M. Ozelo (2), J. Leggo (3), C. Notley (3), H. Brown (3), J. P. Frontroth (4), A. Angelillo-Scherrer (5), F. Baghaei (6), M. S. […]
June 10th 2010 The final results from a three years project searching for the rare bleeding disorder PT-VWD in addition to Updates on the PT-VWD registry were presented at the ISTH-56th SSC meeting in Cairo on May 24th 2010. The project is now finalized. The registry and search for the disease will continue. Publication is underway.
July 10th 09 The PT-VWD registry and results from a worldwide survey will be discussed at the Von Willebrand Factor SSC- bussiness session on Sunday July 12th 09 at 9:30- 12:00 , room 109 AB, Boston Convention & Exhibition Center, Boston, MA. This occurs as a part of the XXII Congress and the 55th Meeting of the Scientific and Standardization Committee […]