Through
various surveillance projects, CDC monitors the extent of
disease, the risk factors, and related complications in
persons being treated with blood products. CDC is currently
involved in the following projects:
Universal Data Collection (UDC) project to
monitor the safety of the blood supply and the occurrence of
joint complications
Surveillance for Creutzfeldt-Jakob disease
(CJD) to establish a system to monitor the presence of this
disease
Universal Data Collection project
CDC has
established the UDC project to monitor the safety of the
nation's blood supply for persons being treated with blood
products, as well as to monitor the occurrence of joint
complications experienced by persons with
hemophilia. UDC is conducted through a network of
specialized health-care centers that serve persons with
various blood disorders.
The types
of data gathered through the project consist of
- participant
demographics
- bleeding
disorder diagnosis
- treatment
regimens and factor replacement products used
- participant
blood sample to test for exposure to bloodborne viruses
- history of
illness due to bloodborne infections and treatment for or
vaccination against such infections
- history of
joint disease and joint range of motion measurement
The
monitoring of the blood supply has virtually eliminated
the spread of viral diseases through the use of blood
products. Prevention measures have included
-
more
sensitive donor screening methods
-
viral
inactivation (viral-killing techniques)
-
development of genetically
engineered (recombinant) factor
The
monitoring of joint complications helps CDC to
evaluate
patterns and changes in rates of complications
assess the
effectiveness of prevention activities
For more
information
Hemophilia Treatment Center Directory and UDC project
database
Locate a hemophilia treatment center
UDC Working Group
UDC Research Proposal Submission Template
The UDC Working Group is seeking proposals from
investigators with clinical research questions that may be
addressed using data collected as part of UDC. Investigators
from any discipline who are affiliated with a federally
supported hemophilia treatment center are encouraged to
submit proposals using the following template and
instructions.
UDC Research Proposal Submission Template
(MSWord)
UDC Working Group Guidelines February 2006
Publications
Soucie JM, Crianfrini C, Janco RL,
Kulkarni R, et.al, Joint range of motion among young males
with hemophilia: prevalence and risk factors. Blood 2004;103(7):2467-2463
MMWR January 3, 2003 /51(51);1152-1154
Blood Safety Monitoring Among Persons with Bleeding Disorders
-- United States, May 1998--June 2002
Soucie JM, Siwak EB, Hooper WC, Evatt BL, Hollinger FB, and the
Universal Data Collection Project Working Group. Human parvovirus
B19 in young males with hemophilia A: associations with treatment
product exposure and joint range-of-motion limitation. Transfusion
2004; 44:1179-1185
Wu
C, Mason B, Jong J, Erdman D, McKernan L, Oakley M, Soucie M, Evatt
B, and Yu MW. Parvovirus B19 transmission by a high-purity factor
VIII concentrate. Transfusion 2005; 45:1003-1010
Kempton CL, Soucie JM, Abshire TC. Incidence of inhibitors in a
cohort of 838 males with hemophilia A previously treated with factor
VIII concentrates. J Thromb Haemostasis 2006; 4:2576-2581
UDC Brochures
UDC: Blood safety
PDF format (15 KB)
UDC fact sheet
*(50 KB)
UDC fact sheet - en Espanol* (49 KB)
Frequently asked questions about UDC
*(57 KB)
Frequently asked questions about UDC - en Espanol *(56
KB)
UDC information for health-care providers*(54 KB)
UDC surveillance testing algorithms*(57 KB)
*Copies
can be obtained by contacting
HANDI at 800-42-HANDI
UDC
Surveillance reports
Update:
UDC Newsletter
Slide Sets
Distribution of UDC
Males with Hemophilia in the U.S. – A Set of GIS Maps (2005)
(HTML)
Surveillance for Creutzfeldt-Jakob disease
CDC is
establishing a surveillance system to monitor for
Creutzfeldt-Jakob disease (CJD), a rare, fatal, progressively
degenerative brain disease that causes dementia. No case of
CJD transmission by human blood products has been documented,
and the risk of getting CJD from contaminated blood products
is most likely extremely small.
For more
information
CJD
information and resources
The Adobe™ Acrobat™ (PDF) file format is viewable only with
the free
Adobe™ Acrobat™ Reader installed on your computer.
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Date: November 21, 2005
Content source: National Center on Birth Defects and Developmental
Disabilities
