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Blood Disorders
Blood Disorders > Surveillance

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 Adobe Acrobat file format


Soucie JM, Crianfrini C, Janco RL, Kulkarni R,, 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) Adobe Acrobat file format

UDC fact sheet *(50 KB) Adobe Acrobat file format
UDC fact sheet - en Espanol* (49 KB) Adobe Acrobat file format

Frequently asked questions about UDC *(57 KB) Adobe Acrobat file format
Frequently asked questions about UDC - en Espanol *(56 KB) Adobe Acrobat file format

UDC information for health-care providers*(54 KB) Adobe Acrobat file format

UDC surveillance testing algorithms*(57 KB) Adobe Acrobat file format

*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

Get Adobe Acrobat Reader The Adobe™ Acrobat™ (PDF) file format is viewable only with the free Adobe™ Acrobat™ Reader installed on your computer.

Get Adobe Acrobat Reader

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Date: November 21, 2005
Content source: National Center on Birth Defects and Developmental Disabilities


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