| Muscular Dystrophy Project |  |
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The Muscular Dsytrophy Surveillance Tracking and Research Network (MD STARnet) is a research network funded by the Centers for Disease Control and Prevention. There are six sites in the network. They are Arizona, Colorado Hawaii, Georgia, Iowa, and western New York. The program started in the year 2003. It will continue until at least 2010.
Duchenne/Becker muscular dystrophy (DBMD) is the most common muscular dystrophy in children. DBMD affects about 1 out of every 3,500 to 5,000 boys. Girls rarely have DBMD. Of the more than 4 million births in the United States each year, about 400 to 600 are children with DBMD.
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MD STARnet’s goal is to find everyone with Duchenne or Becker muscular dystrophy born after 1981 in these sites. This will help us estimate the number of people who have DBMD. Another goal is to gather information about people who have DBMD. This includes how DBMD was diagnosed, signs and symptoms of DBMD, and the services and treatment patients and families receive. We hope to answer questions such as:
• How common is DBMD?
• Is it equally common in different racial and ethnic groups?
• What are the early signs and symptoms of DBMD?
• Do factors such as the type of care received or the type of gene changes affect the severity or course of DBMD?
• What health care-related services, medical and social, are families receiving?
• Does health care vary in different areas? Do different populations receive different care?
Children with DBMD will be identified using information gathered from many different sources such as clinical medical records and hospital records. MENTION ANY OTHERS?? Public health researchers will collect information from these sources to keep track of each child’s health care and changes over time. All of the data collected will be pooled anonymously (without names).
Families will also be invited to take part in interviews and surveys. The purpose of these interviews and surveys is to identify and describe the health and service needs of individuals and families affected by DBMD that might not be found in the medical records. We hope that knowledge gained from this study will lead to improved health care and support systems in the future. This information will be shared with doctors, public health officials, therapists, and educators. This could help families receive better health care. It could also help the organizations that serve families better meet their needs.
Publications and Findings
MD STARnet research has been presented at many scientific meetings. Presentations have been made at the American Academy of Neurology and the World Muscle Society. We are doing research on gene problems that cause DBMD, the prevalence of DBMD across our sites, steroid use, and the diagnostic journey for families. For a complete list of publications click <here>,
In 2006, MD STARnet published:
The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): Surveillance Methodology. Birth Defects Research (Part A), 2006, issue 76, pages 793-797. Lisa A. Miller, Paul A. Romitti, Christopher Cunniff, Charlotte Druschel, Katherine D. Mathews, F. John Meaney, Dennis Matthews, et. al.
In this report, we described our method for finding persons with DBMD and gathering information about them and their medical caaare. We develop a standard tool for recording and tracking information over time. Our sources for information go beyond the usual sources such as neuromuscular clinics and neurologists’ offices. We included service sites for children with special health care needs, hospitals, and hospital discharge databases. We also developed a way to confirm each diagnosis of DBMD. Neuromuscular doctors from each state meet and decide if a case meets the definition of DBMD. This system is critical to our goal of understanding how many people have DBMD and their health outcomes.
More specific inquiries about these data or CRCSN are welcome and can be addressed to:
to write or call:
Colorado Responds to Children with Special Needs
Colorado Department of Public Health and Environment
4300 Cherry Creek Drive South, DCEED-CRC-A3
Denver CO 80246-1530
Phone: (303)692-2700
Fax: (303)782-0904