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Related Experiment Video

Updated: Jun 14, 2026

Microfluidics in Assessing Platelet Function

Microfluidics in Assessing Platelet Function

Published on: November 8, 2024

The universal data collection surveillance system for rare bleeding disorders.

J Michael Soucie¹, Sally McAlister, Ann McClellan

¹Division of Blood Disorders, National Center on Birth Defects and Developmental Disabilities, CDC, Atlanta, Georgia 30333, USA. msoucie@cdc.gov

American Journal of Preventive Medicine

|March 25, 2010

Summary

The Universal Data Collection (UDC) program monitors rare bleeding disorders, collecting data to improve patient care and prevent complications like joint disease. This surveillance project enhances public health strategies for inherited bleeding conditions.

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Area of Science:

Public Health
Epidemiology
Hematology

Background:

Chronic, rare, inherited bleeding disorders require national surveillance.
The Universal Data Collection (UDC) program has monitored these conditions since 1998.
Hemophilia Treatment Centers (HTCs) are key data collection sites.

Purpose of the Study:

Establish a blood-safety monitoring system.
Collect clinical outcomes data to track infectious diseases and joint complications.
Monitor trends in bleeding disorder prevalence and associated health issues.

Main Methods:

Uniform data collection across 130 HTCs in the U.S. and territories.
Gathering longitudinal data, including joint range-of-motion measurements.
Utilizing geographic information systems (GIS) for needs assessment.

Main Results:

Developed a large database for studying joint disease progression risk factors.
Provided evidence for public health campaigns promoting healthy weight in hemophilia patients.
Identified risk factors for complications like joint infections and improved care accessibility.

Conclusions:

UDC program data are crucial for understanding and managing bleeding disorders.
Findings inform national prevention strategies and public health initiatives.
Future analyses will further refine public health prevention strategies for diverse populations.