Registry/Database

 

PT-VWD Registry Table-May 2016 Update

Project is Now Complete.

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About the Registry

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

Department of Anatomy and Cell Biology, Queen’s University
Kingston, Ontario
Canada