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Registries & Databases
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SSC Databases and Registries

» Coagulation Sequence and structure database (CoagBase). A database of coagulation and platelet proteins and genes, protein features, reference sequences, locus specific mutation database links and a ready reckoner for conversion of legacy to Human Genome Variation Society (HGVS) amino acid numbering.

» Clotting Factor Concentrates

» Factor XIII Database

» Glanzmann's Thrombasthenia Database
These databases of clinical, biochemical, and mutation information on patients with Glanzmann thrombasthenia are maintained by Deborah L. French at the Mount Sinai School of Medicine, New York, NY and Alan Nurden at the Hôpital Cardiologique, Pessac, France.

» International Registry for Levonorgestrel Intrauterine System In Women with Inherited Bleeding Disorders

» Protein S Deficiency: A Database of Mutations - First Update

» Rare bleeding disorder database

» International Registry on recurrent venous thromboembolism in anticoagulated patients with cancer

» Splanchnic Vein Thrombosis International Registry

»  Survey on Anticoagulated Patients Registry:  Registry for the computerized data collection of patients chronically treated with anticoagulants


» Thrombogenomics website

» VWF Database
The new ISTH VWF database was presented at the Boston 2002 SSC Meeting by Dr. Anne Goodeve. This link is hosted by the University of Sheffield, UK.

» Platelet Type von Willebrand Disease Registry/Database

» International Registry on Acquired von Willebrand Syndrome

» Non-Immune Thrombocytopenia Registry--for inquiries please contact Dr. Amy Geddis at

» International Epidemiological Study of Neonatal Purpura Fulminans -- A Web-based registry created under the auspices of the ISTH and hosted by The Hospital for Sick Children, Toronto, Canada. Members interested in partaking in this initiative, please contact;, or

Other Registries/Databases:

» Fibrinogen Database

» Mutations causing rare bleeding disorders: deficiencies of prothrombin, factor V, factor VII, factor X, factor XI, factor XIII, combined factors V and VIII, and vitamin K dependent coagulation factors. UPDATED TO JANUARY 2011.Supplement to Chapter 125 of Williams Hematology 8th Edition, 2010 (printed with permission from McGraw Hill)

» Rare Coagulation Disorders Resource Room:, a dynamic, open-access website,was developed through a collaboration of the international RBDD Registry (, the Indiana Hemophilia & Thrombosis Center (, and the Rare Coagulation Disorders Subcommittee of the National Hemophilia Foundation (NHF,, a group appointed by NHF’s Medical and Scientific Advisory Council. The Resource Room provides current and searchable information on the basic science, clinical management, available laboratory and genetic testing, clinical trials, and global research initiatives for these very rare and heterogeneous coagulation disorders.


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