Public Health Surveillance for the Prevention of Complications of Bleeding Disorders

The Northwestern Center for bleeding disorders is a Hemophilia Treatment Center (HTC), which is a federally funded center. As required by the federal grant we will be participating in the CDC Public Health Surveillance for Bleeding Disorders project funded by the CDC and awarded to the American Thrombosis and Hemostasis Network (ATHN). The purpose of the CDC Public Health Surveillance for Bleeding Disorders project is to collect surveillance data from the US network of HTCs to describe the epidemiologic characteristics of people with bleeding disorders and the complications of these disorders. The target populations for the Registry are people of all ages with bleeding disorders, primarily those with clotting factor deficiencies such as Hemophilia, von Willebrand disease and other rare clotting factor deficiencies. All persons with a bleeding disorder diagnosis who receive care at an HTC are eligible for inclusion in the data collection effort. Patients will be consented for the data collection and specimen collection by the Bleeding disorders Center healthcare providers. ATHN is providing the HTCs access to a clinical, web-based system for electronic data collection. The principal investigator at the local institution, Dr. Anaadriana Zakarija, will oversee the project, consent patients and provide information as needed to the CDC or ATHN. The hemophilia nurse, Sandra Harris, at the Northwestern HTC will extract and input requested data into the standardized electronic report forms, regularly, validate the completeness and correctness of the content, and then electronically submit the data using the ATHN database. In addition certain patients may be asked to provide a serum or plasma specimen based on their exposure to certain treatment products, which will be tested for hepatitis B, C and HIV. In addition plasma specimen will be tested for inhibitors. Labs specimens will be sent to a centrally designated laboratory for testing. As part of the investigation, HTC center staff may be asked to obtain additional clinical specimens and risk factor information.