Hemophilia Surveillance

"Data from CDC’s hemophilia surveillance programs can help prevent or reduce hemophilia-related health problems

For more than 20 years, the Centers for Disease Control and Prevention (CDC) has successfully developed, implemented, and maintained a surveillance (monitoring) program for hemophilia to advance our understanding of the condition and the needs of the hemophilia community.  

Hemophilia is a rare, inherited (passed from parents to child) bleeding disorder in which the blood does not clot properly. Our blood contains many proteins called clotting factors that can help someone stop bleeding. People with hemophilia have low levels of either factor VIII (8) or factor IX (9) blood clotting proteins. Hemophilia can lead to excessive bleeding after an injury or trauma, as well as spontaneous bleeding that can occur for no apparent reason. Hemophilia primarily affects men, but women can have hemophilia too.

Public health tracking systems can help scientists learn more about the health problems and challenges people with hemophilia face. This information can ultimately help improve their long-term health and quality of life. Prior to 1990s, however, there was a lack of uniform health information on people with hemophilia. It is a challenging condition to track, given how rare the condition is and the complexities in characterizing both hemophilia and the chronic health problems related to hemophilia. To address this challenge, CDC collaborated with federally funded hemophilia treatment centers (HTCs) to create a national public health surveillance program called the Universal Data Collection (UDC) system (1998–2011) and the expanded next-generation Community Counts program, which began in 2011.."
Hemophilia Surveillance 

CDC's Bleeding Disorders Surveillance Work

"What is hemophilia?

Hemophilia is an inherited bleeding disorder in which the blood does not clot properly due to a lack of clotting factor proteins in the blood. As a result, people with hemophilia experience excessive bleeding after an injury or trauma, as well as spontaneous bleeding that can occur for no apparent reason.

Why is hemophilia research important?

Hemophilia is a rare disorder that primarily affects men, occurring in about 1 of every 5,000 male births. Women can have hemophilia too, but it is much rarer in this group. People with hemophilia can experience a range of health problems, such as joint disease and inhibitors (antibodies that can make treating hemophilia more challenging), that impact day-to-day activities and affect overall health and quality of life.

Research helps scientists learn more about the health problems and challenges people with hemophilia face to gain insight into how these health problems can be prevented or reduced to improve health and quality of life.

CDC’s bleeding disorder surveillance work

Historically, one challenge to hemophilia research has been the lack of uniform health data on people living with this condition. To address this challenge, CDC collaborated with federally funded hemophilia treatment centers (HTCs) to create a national public health surveillance project called the Universal Data Collection (UDC) system. To expand upon the work of the UDC system, which concluded in 2011, CDC developed the Community Counts program..."
Bleeding disorders

Women and Hemophilia

"Women Can Have Hemophilia, Too

Learn how hemophilia is passed in families, and read Shellye’s inspirational story about her journey toward a diagnosis and treatment plan for hemophilia.

Hemophilia is an inherited bleeding disorder primarily affecting males—but females can also have hemophilia. Learn how hemophilia is passed in families, and read Shellye’s inspirational story about her journey toward a diagnosis and treatment plan for hemophilia.

What is hemophilia?

Hemophilia is a bleeding disorder in which the blood does not clot properly. It is caused by a lack of clotting factor proteins in the blood. As a result, people with hemophilia may experience excessive and longer-than-usual bleeding after physical injury or trauma, but they can also experience bleeding without injury or any obvious trigger. People with hemophilia can use treatments called clotting factor concentrates (also known as “factor”) to replace the missing clotting factor proteins in their blood to stop bleeding. This is typically done by injecting factor into a person’s vein. Often, the best choice for good, quality medical care for people with hemophilia is from a comprehensive hemophilia treatment center (HTC). Find an HTC near you.

What causes hemophilia?

Hemophilia is caused by a mutation (change) in one of the genes that provides instructions within cells for making clotting factor proteins in the blood. This mutation results in hemophilia by preventing the clotting factor protein from working properly or causing it to be missing altogether. These genes are located on the X chromosome. Males have one X and one Y chromosome (XY) and females have two X chromosomes (XX). A male inherits his X chromosome from his mother and his Y chromosome from his father. A females inherits one X chromosome from each parent. A male can have hemophilia if he inherits an affected X chromosome (an X chromosome with a mutation in the gene that causes hemophilia) from his mother.

Hemophilia can affect women, too

Females can also have hemophilia, but it is much rarer. When a female has hemophilia, both X chromosomes are affected or one is affected and the other is missing or non-functioning. In these females, bleeding symptoms can be similar to males with hemophilia. When a female has one affected X chromosome, she is a “carrier” of hemophilia. Being a female carrier of hemophilia is not the same as having hemophilia, although female carriers may experience symptoms of hemophilia. A female carrier can also pass the affected X chromosome on to her children..."
Hemophilia

What is an inhibitor?

"Inhibitors are complex, costly health problems that can affect people withhemophilia and von Willebrand disease (VWD) type 3. This Bleeding Disorders Awareness Month, learn about inhibitors and read Anthony’s story on living a full life with an inhibitor.

About Inhibitors

All people with hemophilia and VWD type 3 are at risk for developing an inhibitor – an antibody – to treatment used to stop or to prevent a bleeding episode.

Hemophilia and VWD type 3 are bleeding disorders in which the blood does not clot due to missing or low levels of proteins, known as ‘clotting factors,’ in the blood. People with hemophilia and VWD type 3 receive treatment products called ‘clotting factor concentrates’ to replace missing or low blood clotting factor in their blood. This procedure (known as infusion) is carried out by injecting commercially prepared clotting factor concentrates into their vein.

When a person develops an inhibitor, the body thinks that the clotting factor concentrates are harmful, foreign substances and rejects the clotting factor concentrates as treatment. Instead, the body tries to destroy the clotting factor concentrates with an inhibitor to protect the body, which makes it harder to treat a bleeding episode..."
Inhibitors

CDC Supports Bleeding Disorders Awareness

"On March 1st, staff from the Centers for Disease Control and Prevention's Division of Blood Disorders donned red ties in a show of support for the first-ever Bleeding Disorders Awareness Month™.

"Bleeding Disorders Awareness Month," was recently approved by the U.S. Department of Health and Human Services (HHS) as a National Health Observance in March. This new health observance formalizes and expands upon the event designated by President Ronald Reagan exactly 30 years ago as "Hemophilia Awareness Month." This special month aims to bring together people with all inherited (conditions that run in families) bleeding disorders to raise awareness of these rare conditions and their potential health problems.."
Bleeding disorders

Do You Have Hemophilia and an Inhibitor?

"People with hemophilia lack a protein (a clotting factor) necessary for blood to clot normally. This can lead to spontaneous bleeding as well as bleeding following injuries or surgery. The best way to treat hemophilia is to replace the missing blood clotting factor so that the blood can clot properly. This is done by infusing (giving through a needle into a vein) commercially prepared factor. However, up to 1 in 5 people with hemophilia develop an antibody (inhibitor) to the infused factor used to treat bleeding episodes. The inhibitor prevents the factor from working to stop bleeding. An inhibitor makes treatment for bleeding episodes much more difficult and expensive. Treatment costs associated with inhibitors are on average 3 – 4 times higher and can cost a patient over $1 million in a single year. In addition, people with inhibitors are at increased risk for joint disease and other complications from bleeding that lead to a reduced quality of life..."
Hemophilia and inhibitors