June 12 2006
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:
