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 of the International Society on Thrombosis and Haemostasis.

Progress and update from the Canadian PT-VWD project will be discussed in the von Willebrand Disease oral Session at  ISTH July 2009. http://www.isth2009.com

Title:  CANADIAN PLATELET-TYPE VON WILLEBRAND DISEASE (PT-VWD) PROJECT: PROGRESS AND UPDATE

Data from the Canadian PT-VWD project was presented in the ISTH-SSC meeting on VWD on July 3-4 as a part of Updates on VWD registries. Click here to see minutes from the meeting

Preleminary data from the Canadian PT-VWD project is presented in the WFH congress Istanbul 1-6 2008

For information click here

Through the ISTH EQATH, these participants have distributed information about the participation in the Canadian PT-VWD project:

QMP-LS (Quality Mangament Program - Labaoratory Service) distributes an announcement regarding a project to investigate the occurrence of platelet type von Willebrand Disease (PT-VWD) and differential identification from the closely similar, type 2B VWD to laboratories performing von Willebrand investigations in Ontario, Canada

Hemophilia Today Announces Participation in the Platelet Type VWD Project and Canadian Hemophilia Society approved second year funding in its Spring 2008 Edition, Vol. 2.

Hemophilia Today is the official publicartion of the Canadian Hemophilia society.

Click here for more information

Dears

The overall aim of the PT-VWD database/ registry project is to determine the frequency of this rare bleeding disorder in the world and to collect data about the molecular pathology, phenotype/ genotype correlations as well as treatment. Therefore, we invite you to complete a form that includes the main information in order to allow us to learn about your experience with PT-VWD patients and if you would like to participate in the Canadian PT-VWD project.

The objectives of the PT-VWD Registry are:

• To document patients with Platelet- type VWD worldwide.
• To characterize genetic abnormalities responsible for this phenotype and to determine the frequency of misdiagnoses among type 2 B VWD
• To increase awareness among physicians, hematologists and patients about the importance of discrimination between type 2B and PT-VWD
• To improve the understanding of natural history of the disease, diagnosis and management and to establish a standard for treatment of bleeding conditions as well as prophylaxis.

Physicians worldwide are encouraged to collaborate, share observations, and evaluation data in an effort to guide and assess future diagnostic/therapeutic interventions.

Please do not hesitate to contact us by phone or by email in case any further details are required.

Yours sincerely,

Maha Othman MD MSc PhD
othman@queensu.ca

Department of Pathology and Molecular Medicine
Queen’s University
Kingston, Ontario
Canada

This project is funded by: