Highlights & Acknowledgements

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Pages in this Report

  1. ›Highlights & Acknowledgements
  2. Background
  3. Methods
  4. Geographic Distribution of Registry Participants
  5. Diagnosis & Severity
  6. Registry Characteristics
  7. Age
  8. Race/Ethnicity
  9. Education
  10. Weight Status
  11. Health Insurance Coverage
  12. Viral and Vaccination History
  13. Healthcare Utilization and Absenteeism
  14. Family History and Genetic Mutation
  15. Complications
  16. Treatment
  17. Procedures and Comorbid Conditions
  18. Technical Notes
  19. Participating HTCs
Related Pages

2014-2017 Report Highlights

  • In the first 3 years of data collection, 9,173 males with hemophilia from 133 hemophilia treatment centers (HTCs) enrolled in the Community Counts Registry for Bleeding Disorders Surveillance (the Registry, hereafter), a public health monitoring program for patients with bleeding disorders receiving care at HTCs in the United States (U.S.).
  • The male participants who enrolled in the Registry from 2014–2017 account for 44% of the males with hemophilia who were treated at HTCs during this timeframe.
  • Seventy-nine percent of the males with hemophilia enrolled in the Registry had hemophilia A and 21% had hemophilia B.
  • Fifty-nine percent of males with hemophilia A and 39% of males with hemophilia B had severe hemophilia.
  • Twenty percent of the males with hemophilia (2-19 years old) were obese, a higher percentage than males in the same age group (18%) who were examined in the National Health and Nutrition Examination Survey (2015–2016).
  • Fifty-eight percent of the males with hemophilia A and 53% of patients with hemophilia B, age 25 years of age or older, had an education beyond a high school diploma.
  • For both hemophilia types, hepatitis A vaccination status was unknown for about 22% of the males born in 1985 or later and for about 32% of males born before 1985.
  • For both hemophilia types, hepatitis B vaccination status was unknown for about 16% of the males born in 1985 or later and for about 30% of males born before 1985.

Acknowledgements

We thank the American Thrombosis and Hemostasis Network (ATHN)  for providing the data platform to electronically record and transmit surveillance data and for serving as the coordinating center for Community Counts activities at HTCs.

We thank the Regional Coordinators and Regional Directors  of the federal HTC regions for their assistance in the implementation of Community Counts. We also thank the HTC care providers and staff  responsible for the enrollment of eligible participants and collection of surveillance data and specimens.

We appreciate the participants and families  who contributed their information to the project.

We would also like to acknowledge the assistance of the members of the Community Counts Executive Committee:

Marilyn Manco-Johnson, MD
University of Colorado Hemophilia and Thrombosis Center
Aurora, CO

Norma Wolf, MBA, MSN, RN
American Thrombosis and Hemostasis Network
Riverwoods, IL

Roshni Kulkarni, MD
Michigan State University Center for Bleeding & Clotting Disorders
East Lansing, MI

Steven Humes, MM, MPH
University of North Carolina at Chapel Hill
Chapel Hill, NC

Travis Tussing, JD
Hemophilia Foundation of Michigan
Ypsilanti, MI