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.
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:
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.
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.
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 care. 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.
This is a collaborative project involving representatives from Department of Health Programs (Birth Defects, Children with Special Health Needs, and Early Intervention Services), Muscular Dystrophy Association (MDA) clinics, Shriners Hospital for Children, Tripler Army Medical Center, Kapiolani Medical Center, Queen’s Medical Center, private neuromuscular clinics, and other pediatric and neurological practices located in Hawai‘i and Guam. Sylvia Au, M.S., C.G.C., is the Director of the Hawaii MD STARnet project. The aim of this project is to increase the number of Asian and Pacific Island participants within the existing study population. Data gathered by project staff will characterize the complications and long term outcomes of individuals with DBMD who are geographically isolated and may face unique barriers. In addition, the project will describe the history and outcome of individuals with DBMD who receive different levels of medical and preventative care while developing a long term monitoring system for these families. Finally, the culture of Hawai`i and Guam may provide insight into unique methods of caring for children and families with DBMD.
Family and Patient Organizations
Muscular Dystrophy Association (MDA) is a health agency made up of scientists and volunteers. MDA offers services like medical exams, flu shots, support groups, and summer camps for kids. They also help with purchase of wheelchairs and leg braces. For more information, visit their website.
Muscular Dystrophy Association In Colorado
Muscular Dystrophy Family Foundation (MDFF) was founded in the year 1958. They provide adaptive equipment. This includes wheelchairs, hospital beds, van lifts, ramps, shower chairs, communication devices, and breathing machines. They also offer support services, such as clinical programs, home visits, and social outings. For more information, go to their website.
Parent Project Muscular Dystrophy (PPMD) was founded in 1994 by parents of children with DBMD. Their mission is to improve treatment, quality of life, and long term outlook. Their website offers information about treatment and personal stories. They have a conference every summer where doctors, scientists, and parents learn about research, care, and advocacy issues.
Finding Clinical Trials is a government website, which provides a list of current federal and private clinical trials. You can search for trials related to DBMD. You will find information about studies, who may join, locations in the United States, and phone numbers for more details.
Kid-Friendly Web Sites
Kids Health is a website that gives doctor-approved health information about infants, children, and teens. The web site offers resources for kids, teens, and parents. For more information, visit their website.
Kid Quest on Disability and Health is a CDC-sponsored web site for middle school students. It gets kids thinking about people with disabilities. Parents and teachers can change the materials to meet students' learning styles and levels. The topics can be used in lessons about health, social studies, and tolerance in society. Parents and teachers can work with students to share ideas, talk about issues, and encourage reflection. Students can use the site on their own, too. For more information, visit their website.
The Children’s Hospital Rehabilitation Clinic
Patient Advocate Foundation (PAF) is a national nonprofit organization. Their goal is to protect patient rights. They help solve insurance, job, and debt matters related to health conditions. Visit their website for more information.
Dolan DNA Learning Center helps people understand genetics:
If you have any questions about MD STARnet in Colorado please contact:
Lisa Miller, MD, MSPH
Dennis Matthews, MD
Local Clinical Reviewer:
Joyce Oleszek, MD
April Montgomery, MHA
Jennifer Donnelly, BS
Cynthia Vogel, RHIA, MS
Beverly Meek, RHIA