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 2019.
MD STARnet’s goal is to find everyone with Duchenne or Becker muscular dystrophy (DBMD) born after 1981 in these sites. This will help provide estimates of the number of people who have DBMD. Another goal is to gather information about people who have DBMD, such as how DBMD was diagnosed, signs and symptoms of DBMD, and the services and treatment patients and families receive.
Children with DBMD will be identified using information gathered from many different 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 of the data collected will be pooled anonymously (without names).
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.
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:
Rachel Herlihy, MD, MPH
Dennis Matthews, MD
Local Clinical Reviewer:
Joyce Oleszek, MD
Richard O. Weinert, MA
Richard O. Weinert, MA
Beverly Meek, RHIA