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.
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.
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 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)
- Private Neurologists
- University Physicians Incorporated (UPI) (clinic billing system)
Family and patient organizations
Muscular Dystrophy Association:
720 S. Colorado Blvd., Suite 480-S
Denver, CO 80246
- Muscular Dystrophy Family Foundation.
- Parent Project Muscular Dystrophy.
- ClinicalTrials.gov (search for trials related to DBMD).
13123 E. 16th Ave.
Aurora, CO 80045
- CDC Care Considerations page:https://www.cdc.gov/ncbddd/musculardystrophy/care-considerations.html
- Care Considerations Feature Story:https://www.cdc.gov/features/muscular-dystrophy-care/index.html
Margaret F. Ruttenber M.S.P.H.
Colorado Department of Public Health and Environment
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
Phuong Banh, BS