Muscular dystrophy

muscular dystrophy-affected muscle tissue and normal muscle tissue
 

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The Colorado Department of Public Health and Environment (CDPHE) has been conducting birth defects surveillance since 1989 and active surveillance for Duchenne/Becker muscular dystrophy (DBMD) since 2003, both under public health authority. All cases of muscular dystrophy are subject to reporting by physicians and health care facilities under Board of Health regulations. We have strong, longstanding relationships with the organizations/sources that are used to identify cases of DBMD.

Colorado is part of the U.S. Centers for Disease Control and Prevention's (CDC) Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet) along with other State sites from Western NY, South Carolina, North Carolina’s Piedmont Region, Iowa and Utah. 

MD STARnet is the Muscular Dystrophy Surveillance, Tracking and Research Network and is funded and managed by the Centers for Disease Control and Prevention and is comprised of researchers at state departments of health and universities. 

MD STARnet is the only research program designed to collect health information on everyone with muscular dystrophy living in specific areas of the United States. Most muscular dystrophy research programs collect health information only on people with the disease who are treated by specialists at certain medical clinics. In contrast, MD STARnet collects data from multiple sources. 

By collecting health information on a large number of people from multiple sources, MD STARnet research can be used to help improve the care and quality of life for those living with muscular dystrophy. 

Research from MD STARnet is comprehensive and offers insights into the healthcare experiences of people with muscular dystrophy. The more we know about the experiences of people with muscular dystrophy, the more we’ll learn about the course of the disease, and what factors lead to the best health outcomes.

   
Network goals      

MD STARnet has recently entered its third phase.                                       
  • Phase I (2002-2010) included longitudinal collection of a large set of data elements from medical records for Duchenne and Becker Muscular dystrophies.

  • Phase II (2011-2013) included cross-sectional collection of a smaller set of data elements from medical records for nine muscular dystrophies (Duchenne, Becker, Myotonic, Congenital, Limb-Girdle, Emery-Dreifuss, Facioscapulohumeral, Distal, and Oculopharyngeal).

  • Phase III (2014-2019) will include aspects of Phase I and Phase II methodology. Some data elements will be collected, at least cross-sectionally, for all nine dystrophies. Furthermore, longitudinal data will be collected for two or three dystrophies. The protocol for Phase III is currently under development between the grantee states and CDC.

 
Methods

  • Children with DBMD will be identified using active surveillance information gathered from many sources, such as clinical medical records and hospital records. Passive surveillance will take place through linkages with CDPHEs Vital Records and Vital Statistics Departments within the Center for Health and Environmental Data (CHED) within CDPHE. Muscular Dystrophy is a reportable condition in Colorado 

    • Public health researchers will collect information from these sources to abstract each child’s health care and life transitions over time.

    • All the data collected will be pooled anonymously (without names).

    • Pooled data will then be analyzed by researchers at CDPHE, Children’s Hospital Colorado, and the University of Colorado’s School of Public Health.

    • Colorado researchers are currently analyzing data to determine interrelationships between growth and loss of ambulation, Non-invasive positive pressure ventilation (NIPPV), corticosteroid treatment and growth, and growth and weight curves.

  • Colorado has maintained the relationships and reporting sources developed during the entire MD STARnet project period for surveillance muscular dystrophies. Cases have been identified from all of the sources listed below at the time of this posting.  Current sources for case ascertainment are: 

Colorado Health and Hospital Association – hospital discharge data
CDPHE Vital Records – Death Certificates 
Colorado Responds to Children with Special Needs (CRCSN)
Children’s Hospital Colorado 
University Hospital Adult Muscular Dystrophy Clinic
Kaiser Permanente Health Maintenance Organization (HMO) 
Medicaid 
Private Neurologists 
University Physicians Incorporated (UPI) (clinic billing system)

Resources

Family and patient organizations

Muscular Dystrophy Association:

720 S. Colorado Blvd., Suite 480-S
Denver, CO 80246
303-691-3331
303-691-3379 fax

Kid-friendly websites

Health care 

13123 E. 16th Ave. 
Aurora, CO 80045
720-777-2806

Insurance coverage

Genetics 

 
Project staff

Principal investigator
Margaret F. Ruttenber M.S.P.H.
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 and Data Manager
Richard O. Weinert, M.A.
   
Medical Record Abstractors
Beverly Meek, RHIA
Sheila Gousman