Hemophilia
Hemophilia is an inherited bleeding
disorder that affects 18,000 persons (primarily males) in the United
States. The disorder results from deficiencies in blood clotting
factors and can lead to spontaneous internal bleeding and bleeding
following injuries or surgery. These bleeding episodes can cause
severe joint damage, neurological damage, damage to other organ
systems involved in the hemorrhage, and, in rare cases, death.
Treating the bleeding episodes involves the prompt and proper use of
clotting factor concentrates.
von
Willebrand disease
The most common bleeding disorder is
von Willebrand disease (vWD), which is found in approximately 1-2%
of the U.S. population. VWD results from a deficiency or defect in
the body's ability to make von Willebrand factor, a protein that
helps blood clot. Although VWD occurs in men and women equally,
women are more likely to notice the symptoms because of heavy or
abnormal bleeding during their menstrual periods and after
childbirth.
Prevention
activities
-
CDC helps support a network of
hemophilia treatment centers
(HTCs). This network promotes the management, treatment, and
prevention of complications experienced by persons with hemophilia
and other bleeding disorders.
-
CDC has established a surveillance
system, the Universal Data Collection
project, to monitor blood safety and to conduct research on
health-care outcomes. The system is integrated into the HTC network.
For more
information
Locate an HTC
HTC Directory
and Universal Data Collection project database
Publications
Blood safety fact sheet
PDF format (15 KB)
Basic Concepts of Hemophilia:
Guide for hemophilia health-care providers (538 KB)
Basic Concepts of Hemophilia: Self-study workbook
for families (available
by mail from
the National Hemophilia Foundation)
Soucie JM, Symons J
4th, Evatt B, Brettler 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(2):198-206.
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, Evatt B, Jackson D, and the Hemophilia
Surveillance System Project Investigators. Occurrence of hemophilia
in the United States. Am J Hematol 1998;59:288-294.
Organizations
National Hemophilia Foundation
World Federation of
Hemophilia
International Society on
Thrombosis and Haemostasis
American Society of Hematology
Video
Universal Data Collection (UDC) Joint Range of Motion Video
Introduction
This module provides a brief introduction to what the tape is about
and why it is important to accurately measure and collect joint
range of motion.
Getting Started
This module lists the things to have on hand before viewing the
measurement techniques in the demonstration video such as the UDC
Joint Range of Motion Reference Guide, the UDC Annual Visit Form,
the goniometer specified in the Reference Guide, and if possible a
practice patient.
Annual Visit Form and Definitions
This module provides a review of the annual visit form and
definitions for recording joint range of motion measurements.
The Goniometer
This module provides an introduction to the device used to measure a
joint’s range of motion. The parts of the goniometer are described
as well as how to use the goniometer to take accurate readings of
joint range of motion.
ROM Measurement Procedures: Hip Extension
This module provides a demonstration of the proper way to measure
hip extension.
ROM Measurement Procedures: Hip Flexion
This module provides a demonstration of the proper way to measure
hip flexion.
ROM Measurement Procedures: Knee Flexion and Extension
This module provides a demonstration of the proper way to measure
knee flexion and extension.
ROM Measurement Procedures: Shoulder Flexion
This module provides a demonstration of the proper way to measure
shoulder flexion.
ROM Measurement Procedures: Elbow Flexion and Extension
This module provides a demonstration of the proper way to measure
elbow flexion and extension.
ROM Measurement Procedures: Elbow Pronation and Supination
This module provides a demonstration of the proper way to measure
elbow pronation and supination.
ROM Measurement Procedures: Ankle Dorsiflexion and Plantar Flexion
This module provides a demonstration of the proper way to measure
ankle dorsiflexion and plantar flexion.
Conclusion
This module concludes the joint range of motion demonstration video,
provides key points to remember, and explains how the joint range of
motion data collected for UDC will be used by CDC to develop and
evaluate interventions designed to reduce joint disease.
The Adobe™ Acrobat™ (PDF) file format is viewable only with the free
Adobe™ Acrobat™ Reader installed on your computer.
Disclaimer: Links to non-Federal
organizations found at this site are provided solely as a service to
our users. These links do not constitute an endorsement of these
organizations or their programs by CDC or the Federal Government,
and none should be inferred. CDC is not responsible for the content
of the individual organization webpages found at these links.
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Date: November 21, 2005
Content source: National Center on Birth Defects and Developmental
Disabilities
