About CDC’s Work on Hemophilia
The mission of CDC’s Division of Blood Disorders and Public Health Genomics is to reduce the morbidity and mortality from blood disorders through comprehensive public health practice. CDC is uniquely positioned to reduce the public health burden of bleeding disorders such as hemophilia by:
- Contributing to a better understanding of hemophilia and its complications.
- Ensuring that prevention programs are developed, implemented, and evaluated.
- Developing information that is accessible to consumers and health care providers.
- Implementing programs that can improve the quality of life for people living with hemophilia.
Community Counts is a CDC-funded public health monitoring project that aims to build and improve upon the UDC system, which ended in 2011. The purpose of this project is to collect information about common health issues, medical complications, and causes of death among people with bleeding disorders receiving care at HTCs. Community Counts consists of three components:
- The HTC Population Profile, which collects some specific data to describe the overall HTC population;
- HTC Mortality Reporting, which tracks patient characteristics, diagnoses, and causes of death of HTC patients; and
- The Registry for Bleeding Disorders Surveillance, which collects detailed information on treatment and outcomes as well as on factors that increase the risk for complications from bleeding disorders.
To successfully carry out the Community Counts program, the Division of Blood Disorders and Public Health Genomics has partnered with the American Thrombosis and Hemostasis Network (ATHN) and the U.S. Hemophilia Treatment Center Network (USHTCN).
CDC’s Hematologic Research Laboratories
As the lead public health agency, CDC is continually advancing science to prevent disease and its complications. Our hematologic research laboratories play a vital role in advancing the scientific knowledge of blood disorders such as hemophilia. We currently conduct studies to evaluate, improve, and standardize methods and procedures for classifying blood disorders.
Health Education and Outreach
Raising overall awareness about hemophilia is critical to advancing public health. To help achieve this, we support education and outreach activities for health promotion and wellness programs. For example, CDC funded the National Hemophilia Foundation’s “Do the 5!” campaign. This awareness campaign focused on five strategies to help people with hemophilia live a longer and healthier life.
Understanding how to manage bleeding episodes at home and knowing when to consult with a hemophilia treatment center is essential to achieving better health outcomes for people with hemophilia. Through the use of newer technologies such as online videos and web-based social networking, more families can be reached and receive information and support on hemophilia management.
CDC currently collaborates with organizations such as the National Hemophilia Foundation and the Hemophilia Federation of America on education and outreach projects that promote wellness for people with hemophilia. Projects were done to better understand and meet the challenges for the following populations:
- Families of persons with a recent hemophilia diagnosis
- Young adults who are transitioning to managing their hemophilia care independently
- People with hemophilia who will benefit from healthy weight programs
- Aging adults with hemophilia
- Other hard-to-reach populations (e.g., Amish)
CDC is also working to address the hemophilia community’s need for information and tools before and during an emergency or disaster. Disasters and emergencies can create uncertainty and leave people unable to get the necessary treatments when they are needed the most. Planning ahead is very important for people who have or care for someone who has hemophilia or another bleeding disorder.
To address this need, CDC collaborates with the National Hemophilia Foundation and the American Thrombosis and Hemostasis Network to provide information, training, and materials for families with bleeding disorders so that they are prepared for a disaster or an event that disrupts continuity of care. Emergency “go-bags” with contact information for medical care and necessary emergency items have been developed and disseminated to affected bleeding disorder families. For more information about emergency go-bags and other readiness tools, contact NHF’s information clearinghouse—known as HANDI—at 1-800-42-HANDI.
Informatics and Infrastructure
It is important to design and offer data collection systems that are flexible and minimize the burden of data reporting. To meet this requirement, informatics systems provide the capability for investigators and collaborators to submit data in a variety of formats, including paper forms, electronic submission to a website, and export of data from third-party software or information systems. Additionally, a sound informatics infrastructure can help to coordinate and align data from multiple sources (e.g., clinical and laboratory data).
Comprehensive Hemophilia Treatment Centers
CDC invests in identifying, monitoring, and investigating bleeding disorders such as hemophilia so that we can better understand the prevalence and impact of the disorder. A core activity is our collaboration with the U.S. Hemophilia Treatment Center Network (USHTCN), a network of federally funded, specialized health care centers called hemophilia treatment centers or HTCs. These centers provide care to address all needs—physical, psychosocial, and educational—of people with hemophilia.
HTCs currently provide comprehensive preventive care to more than 35,000 children and adults with hemophilia and other bleeding disorders. A CDC study of 3,000 people with hemophilia showed that those seen in an HTC were 40% less likely to die of a hemophilia-related complication than were those who did not receive care at an HTC.1
A CDC study has also demonstrated that the rate of hospital stays for bleeding-related events among patients seen in HTCs was 40% lower than that of patients seen in other care facilities.2
The Universal Data Collection System
For more than 10 years, CDC supported the Universal Data Collection (UDC) system, a surveillance system within the USHTCN that monitored the presence of blood borne infections in people with hemophilia and other bleeding disorders. Data were collected to help determine rates and severity of disease complications, describe treatment and care patterns, and determine areas for further study. More than 80% of people with hemophilia seen in the USHTCN participated in CDC’s UDC surveillance effort. From 1998 to 2011, UDC captured information on approximately 27,000 participants representing over 97,000 annual visits. The data from UDC have been used to describe complications among patients receiving care at HTCs. Data collection for UDC ended in 2011 – a new surveillance initiative, Community Counts – Registry for Bleeding Disorders Surveillance, will build on the work of the UDC and continue data collection in collaboration with the HTCs. In addition to surveillance activities, other research studies are being conducted to define and determine the causes and complications of hemophilia.
- Soucie JM, Nuss R, Evatt, B, Abdelhak A, Cowan L, Hill H, Kolakoski M, Wilber N, and the Hemophilia Surveillance System Project Investigators. Mortality among males with hemophilia: relations with source of medical care. Blood 2000; 96:437-442.
- Soucie JM, Symons J, Evatt B, Bretler D, Huszti H, Linden J, and the Hemophilia Surveillance System Project Investigators. Home-based factor infusion therapy and hospitalization for bleeding complications among males with haemophilia. Haemophilia 2001;7:198-206.