HTC Population Profile

Technical notes

Data icon

The HTC Population Profile is a set of 12 data items collected on patients with bleeding disorders or venous thromboembolism. These patients receive care at Hemophilia Treatment Centers (HTCs) that are part of the U.S. Hemophilia Treatment Center Network (USHTCN), a network of 144 HTCs located throughout the United States and its territories. HTCs practice a model of care delivery called comprehensive (integrated) care. This care includes specialized prevention, diagnostic, and treatment programs. It also includes family-centered education, research, and support services for patients and families living with bleeding disorders. Congress provides support to HTCs through the Health Resources and Services Administration and the Centers for Disease Control and Prevention (CDC). CDC sponsors Community Counts, a project with the American Thrombosis & Hemostasis Network and the USHTCN that monitors the complications of bleeding disorders. USHTCN centers that participate in the Community Counts project collect data on common health issues, medical complications, and causes of death that affect people with bleeding disorders.

Data for the HTC Population Profile component of the Community Counts project are collected as a de-identified¹ data set that is compliant with the Health Insurance Portability and Accountability Act (HIPAA)external icon. Authorization from patients for data collection is sought according to the institutional policies of the participating HTCs.

HTCs report on patients 89 years of age or younger who receive care either in person or by telemedicine. The 12 items collected are 1) year of birth, 2) sex, 3) ethnicity, 4) race, 5) 3-digit ZIP code of residence, 6) insurance status, 7) primary bleeding disorder diagnosis, 8) baseline factor activity,² 9) von Willebrand factor activity (vWF:RCof), 10) von Willebrand factor antigen level (vWF:Ag), 11) hepatitis C (HCV) infection status, and 12) human immunodeficiency virus (HIV) infection status. The data are collected on a calendar-year basis. Most data for a given year are reported by February of the following year, but some records may be received later.

The HTCs began collecting data for the HTC Population Profile in 2012. As of March 31, 2020, 145 individual HTCs have contributed data over time; 115 HTCs provided data for all 8 years (2012-2020). The data in these reports are subject to revision.

¹ De-identified means that the person’s identity cannot be connected with the information because personal identifiers, such as name, address, and birthdate, have been removed.

² Baseline factor activity is a measure of the amount of functioning clotting factor that is present in the blood before infusion of the clotting factor to boost the amount.