Muscular dystrophy

 
Colorado is part of the U.S. Centers for Disease Control and Prevention's Muscular Dystrophy Surveillance Tracking and Research Network.
 
Network goals 
  • Find everyone with Duchenne or Becker muscular dystrophy (DBMD) born after 1981.
    • This will help provide estimates of the number of people who have DBMD.
  • Gather information about people who have DBMD, such as:
    • How DBMD was diagnosed.
    • Signs and symptoms of DBMD.
    • The services and treatment patients and families receive.
  • Provide information that leads to improved health care and support systems.
 
Methods
  • Children with DBMD will be identified using information gathered from many sources, such as clinical medical records and hospital records.
    • Public health researchers will collect information from these sources to keep track of each child’s health care and changes over time.
    • All the data collected will be pooled anonymously (without names).
 
Resources
Family and patient organizations
     303-691-3331
       303-691-3379 fax
 
Kid-friendly websites
 
Health care
     720-777-2806
 
Insurance coverage
 
Genetics
 
Project staff
Principal investigator
Rachel Herlihy, M.D., MPH
Deputy director, Disease Control and Environmental Epidemiology Division
Colorado Department of Public Health and Environment
 
Co-principal investigator
Dennis Matthews, M.D.
Chairman and professor
Department of Rehabilitation Medicine
University of Colorado Denver Health Sciences Center
Children’s Hospital Colorado
 
Local clinical reviewer
Joyce Oleszek, M.D.
Children’s Hospital Colorado
 
Project coordinator
Richard O. Weinert, M.A.
 
Data manager
Richard O. Weinert, M.A.
  
Monitoring specialist
Beverly Meek, RHIA