Community Counts Project History

Community Counts continues the work of the Universal Data Collection (UDC) system.

Community Counts is a public health monitoring program funded by the Centers for Disease Control and Prevention’s (CDC’s) Division of Blood Disorders and Public Health Genomics. The purpose of this project is to gather and share information about common health issues, medical complications, and causes of death that affect people with bleeding disorders who receive care within the U.S. Hemophilia Treatment Center Network (USHTCN). Community Counts aims to continue and expand on the work of the Universal Data Collection system, which ended in 2011.

UDC Monitored the Health of People with Bleeding Disorders

For more than 10 years, CDC supported the UDC system, a project within the USHTCN that monitored the health of people living with hemophilia and other bleeding disorders. From 1998 to 2011, UDC captured information on approximately 27,000 participants for the following purposes:

• To monitor the occurrence of infections that can be transmitted through blood products.
• To monitor the occurrence of joint disease.
• To help determine rates and severity of disease complications.
• To describe treatment and care patterns.
• To determine areas for further study.

Community Counts Improves on the Work of UDC

In 2010, a formal evaluation of UDC was conducted by CDC in order to identify strengths and weaknesses of the program, new research directions, and ways to meet the needs of the growing USHTCN patient population. The Community Counts program design was developed using the recommendations from this evaluation. Additional feedback from the community was gathered through stakeholder meetings, webinars, and discussions. Community Counts improves on UDC by incorporating this feedback into its objectives and activities.

Key Changes:

• Diagnoses: Community Counts has expanded on the types of patients it serves; it includes patients with additional diagnoses, such as platelet disorders, and patients with undiagnosed bleeding disorders.
• Outcomes of Interest: Community Counts collects information on most of the health outcomes covered by UDC, and it will also collect information about conditions that occur along with bleeding disorders or as a result of aging, inhibitors, and use of health services.
• Monitoring Treatment Product-Related Complications: Community Counts has improved the way participants are screened for treatment-related complications by collecting and testing a patient’s blood sample only when he or she is exposed to a potential risk for HIV or Hepatitis C, or when an inhibitor has been identified.

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Learn more about the UDC system >>

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