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Community Counts Hemophilia Treatment Centers Population Profile

Description: 

Through a cooperative agreement with the CDC, the American Thrombosis and Hemostasis Network (ATHN) is leading the network of federally funded hemophilia treatment centers (HTCs) in the United States in the Community Counts national surveillance project for inherited bleeding disorders, (Federal Award Identification Number U27DD000862). Data on their patient populations are contributed by approximately 130 HTCs in the United States. The national HTCs treat over 35,000 persons with inherited bleeding disorders, estimated to be 80% of the entire population of persons with bleeding disorders. Community Counts consists of three data collection components: 1. HTC Population Profile, 2. Registry for Bleeding Disorders Surveillance and 3. Mortality Reporting.
The Community Counts HTC Population Profile is a set of twelve data items collected on patients with bleeding disorders or venous thromboembolism. The data are collected on a calendar-year basis. HTCs report on patients that receive care either in person or by telemedicine during a given calendar year. The twelve items collected are: 1) year of birth, 2) gender, 3) ethnicity, 4) race, 5) 3-digit zip code of residence, 6) insurance status, 7) primary bleeding disorder diagnosis, 8) baseline factor activity, 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.

Supplier: 
Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities and American Thrombosis and Hemostasis Network
Data Years Available: 
2012 - present
Periodicity: 
The data are collected continuously and updated annually.
Mode of Collection: 
Surveillance data: active data collection
Selected Content: 
The Community Counts HTC Population Profile collects these data: 1) year of birth, 2) gender, 3) ethnicity, 4) race, 5) 3-digit zip code of residence, 6) insurance status, 7) primary bleeding disorder diagnosis, 8) baseline factor activity, 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.
Population Covered: 
Over 35,000 individuals with bleeding disorders receiving care at approximately 130 federally funded specialty treatment centers for bleeding and clotting disorders across the U.S. and its territories. This represents approximately 80% of the population with inherited bleeding disorders.
Methodology: 

Data for the Community Counts HTC Population Profile are extracted from the medical record by trained HTC staff using structured, computerized data forms. The data are collected on a calendar-year basis and patients can be followed longitudinally. HTCs report on each patient that receives care, either in person or by telemedicine, during a given calendar year. The data collected comprise a HIPPA-compliant de-identified set, and specific patient authorization for collection is not required except at two HTCs. The data are collected and transmitted to CDC continuously throughout the year.

Response Rates and Sample Size: 
N/A
Interpretation Issues: 
N/A
References: 

Community Counts-The CDC Public Health Surveillance Project (ATHN): Community Counts-ATHN.