About Community Counts

What it is

Community Counts is a public health monitoring program funded by CDC's Division of Blood Disorders and Public Health Genomics (DBDPHG). 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 cared for in US hemophilia treatment centers (HTCs). Community Counts aims to continue the work of the Universal Data Collection System, which ended in 2011.

Community Counts is led by the DBDPHG along with its partners, the American Thrombosis and Hemostasis Network (ATHN) and the US hemophilia treatment center network (USHTCN).

Project priorities

Community Counts gathers health information

HTCs were established in 1975 to ensure access to comprehensive specialized care for people with bleeding disorders in the United States. The DBDPHG currently works with the USHTCN to collect data for public health tracking of the complications of bleeding disorders.

Eligibility

People who receive care at HTCs are eligible to participate in Community Counts if they have been diagnosed with a bleeding disorder. Their condition must be present since birth and must be one of the following bleeding disorders:

• Hemophilia A (classic hemophilia/hereditary factor VIII [8] deficiency)
• Hemophilia B (Christmas disease/hereditary factor IX [9] deficiency)
• Von Willebrand Disease
• Certain rare clotting factor disorders and platelet disorders

HTC patients with blood clots are also included in the HTC Population Profile (HTC PP) component of Community Counts.

Key health outcomes of interest

Community Counts monitors the health of people who receive care at HTCs. The program gathers and shares valuable information on the following key health outcomes:

• Bleeding events and complications: Community Counts tracks rates of complications of bleeding disorders and trends over time. These complications include joint disease, bleeding in or around the brain (also called intracranial hemorrhage), other bleeding events, and inhibitor development.
• Inhibitor development: Community Counts monitors inhibitors, which are antibodies that prevent clotting factor treatment from working. The program establishes estimates of the number of new and existing inhibitor cases in participants, identifies unexpected increases in inhibitors, and identifies risks for inhibitor development.
• Treatment practice and patterns: Early preventive treatment with clotting factor products can protect joints from damage caused by bleeds; however, there are many ways doctors prescribe these preventive treatments (also called prophylaxis). The program aims to identify how differences in preventive treatments impact health outcomes.
• Blood-borne infections: These are infections that can be passed from person to person through blood or blood products. Testing for two types of blood-borne infections, hepatitis C virus and HIV (the virus that causes AIDS), enables CDC to track new and known cases of these infections among participants who have been treated with clotting factor made from blood plasma or other blood products (such as whole blood, packed red blood cells, platelets, and more). The purpose of tracking these infections is to stop the spread of disease. Blood samples will be stored for future studies in the event that new types of infections or other complications are recognized that can be tested for in blood.
• Diseases that occur as a result of aging: Advances in treatments and improvements in health care have enabled people with bleeding disorders to live longer; however, medical conditions that come with older ages are now of concern. Community Counts aims to document the impact of these conditions on participants.
• Causes of death: Community Counts tracks the causes of death among people with bleeding disorders. This information is used to describe trends in the causes of death and to identify potentially preventable causes of death that occur more often among people with bleeding disorders.
• Use of health services: Community Counts monitors the health and economic impact of bleeding disorders by collecting information on the frequency and location of HTC care, emergency room visits and participant hospitalizations. This information can be used to make important policy decisions and continuously improve access to specialized care.

Program structure

This chart shows the Community Counts program structure. It indicates that Community Counts is the larger program, and that the HTC PP, the Registry for Bleeding Disorders Surveillance, and Mortality Reporting are all distinct but equally important components under the Community Counts program.

Components of Community Counts

HTC Population Profile

The HTC PP gathers basic information on all HTC patients with bleeding disorders or blood clots. The following patient demographic information is gathered by the HTC PP:

• Age
• Sex
• Race/ethnicity
• Year of birth
• 3-digit ZIP code (first 3 digits of ZIP code of residence)
• Insurance status
• Year of visit to HTC
• Primary bleeding or clotting disorder
• Baseline factor level/von Willebrand disease laboratory values
• VTE occurrence
• HCV status
• HIV status

This information is used to determine the size and characteristics of the patient population receiving care in the HTCs.

Registry for Bleeding Disorders Surveillance

The Registry for Bleeding Disorders Surveillance (the Registry) gathers more detailed information on HTC patients with bleeding disorders. People who volunteer to participate will have routine medical information collected during HTC visits. Only HTC patients with bleeding disorders can participate in the Registry.

The Registry monitors the following items:

• Characteristics that increase the risk for complications from bleeding disorders
• The outcomes of bleeding disorders
• The impact of bleeding disorders on participants

The Registry contains the following participant information:

• Patient characteristics
• Patient diagnoses
• Bleeding events (including bleeding into joints and/or brain)
• History of inhibitors
• Treatments (including preventive measures)
• Treatment product use
• Presence of other medical conditions

Blood samples are collected from participants. CDC provides free hepatitis C, HIV, and inhibitor testing for participants based on their risk for blood-borne infections and product usage.

The information in the Registry will be used to increase knowledge about the following:

• Medical complications among people with bleeding disorders
• Individuals most suited for prevention programs
• Areas where more study is needed

Mortality Reporting

This project tracks the characteristics, diagnoses, and causes of death of HTC patients with bleeding disorders who have died. This information will be used to monitor trends in the causes of death and to identify causes of death that occur more often among people with bleeding disorders.

Resources

Fact Sheet for HTC Clinicians and Staff

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View and print the fact sheet

Brochure for patients

View and print the brochure: English / Spanish