Muscular Dystrophy Project Frequently Asked Questions |
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What is the Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet)?
We are a research network funded by the Centers for Disease Control and Prevention (CDC). There are six sites in the network. They are Arizona, Colorado, Georgia, Hawaii, Iowa, and western New York. The program started in the year 2003. It will continue until at least 2010.
Our goal is to find everyone with Duchenne or Becker muscular dystrophy (DBMD) 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 study this information to answer questions such as:
- How many people have DBMD?
- What treatments do they receive?
- What services do they need?
We have started to answer these questions and this work will continue over time.
Where Do You Get Your Information?
We use different sources to identify people. These sources include hospital records and muscular dystrophy clinics. In most states, laws allow public health officials to collect information on certain health conditions. Personal information like names is not shared with anyone. Data gathered in each state are grouped into one database without names.
How does MD STARnet work?
Public health scientists collect information from these sources to keep track of each child’s health care and changes over time. Families will also be asked to take part in interviews and surveys to gather information related to DBMD that might not be found in the medical records. All of the data collected will be pooled anonymously (without names) 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 of 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?
What other research activities are going on?
Over the past year, we interviewed caregivers of persons with DBMD. Thank you for helping us with this important work! We will send a survey in 2008 to find out more about the needs of families and persons with DBMD. It is for main caregivers and males with DBMD who are ages 18 years and older. Completed surveys can be mailed back to us for free. We expect this information will be helpful in making sure all families have appropriate help in dealing with DBMD. In the future, we will continue interviews with caregivers about once a year. This will help us track overall health changes over time.
What are the expected benefits of MD STARnet?
Because MD STARnet is an ongoing activity, it will provide better estimates of the number of people with DBMD over time. It will describe the health and service needs of people with DBMD and their families, which in turn will allow communities to provide better services, resources and support. Ultimately, MD STARnet aims to improve the health and quality of life of all families with DBMD.
What do you hope to gain from the research?
We need to better understand the health and needs of people with DBMD and their families. This information will be shared with doctors, public health officials, therapists, and educators. In turn, this could help families like yours receive better healthcare. It could also help the organizations that serve you to better meet your needs.
Duchenne/Becker muscular dystrophy 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.
In Colorado, MD STARnet is being implemented in a partnership between The Children’s Hospital and the Colorado Department of Public Health and Environment.
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).
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.
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