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Muscular Dystrophy

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
720 South Colorado Boulevard, 480-S
Denver, CO 80246
303-691-3331
Fax: 303-691-3379
Email: denvereast@mdausa.org


 

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.


Health Care 

 

The Children’s Hospital Rehabilitation Clinic
13123 East 16th Avenue; 
Aurora, CO 80045
720-777-2806


The primary goal of The Children’s Hospital Rehabilitation program is to optimize each child’s abilities to adapt to the environment, to ease the effects of disability on the child’s development, and to allow the child to be fully included in community living. For more information, call the number above or visit their website.


Insurance Coverage

 

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.


Genetics Information

 

Dolan DNA Learning Center helps people understand genetics:


Understanding Gene Testing is a website that gives basic information about gene testing. It answers common questions about the science, possible benefits, and possible risks of gene testing. Visit their website for more information. 


 

If you have any questions about MD STARnet in Colorado please contact:
Richard O. Weinert, MA - Project Coordinator
Colorado Responds to Children with Special Needs
Colorado Department of Public Health and Environment
4300 Cherry Creek Drive South
Denver, CO 80246
303-692-2620

Principal Investigator:

Rachel Herlihy, MD, MPH
Deputy Director, Disease Control and Environmental Epidemiology Division
Colorado Department of Public Health and Environment

 

Co-Principal Investigator:

Dennis Matthews, MD
Chairman and Professor
Department of Rehabilitation Medicine
University of Colorado Denver Health Sciences Center
The Children’s Hospital

 

Local Clinical Reviewer:

Joyce Oleszek, MD
The Children’s Hospital

 

Project Coordinator:

Richard O. Weinert, MA

 

Data Manager:

Richard O. Weinert, MA

  

Monitoring Specialists:

Beverly Meek, RHIA