Single Gene Disorders Home > Duchenne/Becker Muscular Dystrophy (DBMD) > MDSTARnet

Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet):

CDC is working with researchers in Arizona, Colorado, Georgia, Iowa, and western New York to set up surveillance/tracking systems for Duchenne/Becker muscular dystrophy (DBMD). The goal of the project is to find all DBMD patients in these states by using information from different sources, such as clinic medical records and hospital records. Information about each child’s treatments and medical status will be collected from his medical records, and this will help to find out answers to questions we have about DBMD. Because many DBMD patients are seen in Muscular Dystrophy Association (MDA) clinics, the researchers are also working closely with the MDA clinics in their states. In addition, the researchers will be looking for DBMD patients through other clinics, emergency rooms, pathology laboratories, and other muscular dystrophy associations to ensure that all patients with DBMD are included in the project. The states have developed a common system for finding patients and collecting information. Families who are found in these states will be invited to take part in interviews with public health representatives to provide information related to DBMD that might not be found in their medical records.

The data to be collected include basic demographic information, types of treatments received, types of clinics in which care was received, and any medical complications associated with DBMD. Information will be collected regularly from medical records and interviews.

The data gathered in this project will be pooled anonymously (without names) to answer questions such as:

• How common is DBMD?

• Is DBMD equally common in different racial and ethnic groups?

• What are the early signs and symptoms of DBMD?

• Does the type of care received or the type of gene change affect the severity or progression of DBMD?

• What medical and social services are families receiving?

• Do different populations receive different levels of care?

Principal investigators for MD STARnet:

Arizona brochure PDF
Christopher Cunniff, MD, and F. John Meaney, PhD
Department of Pediatrics
University of Arizona College of Medicine
1501 N. Campbell Avenue
Tucson, AZ 85724-5073

Colorado brochure PDF
Lisa Miller, MD, MSPH
Colorado Responds to Children with Special Needs
Colorado Department of Public Health and Environment
4300 Cherry Creek Drive South
Denver, CO 80246

Dennis Matthews, MD
Children’s Hospital
1056 E. 19th Avenue
Denver CO 80218

Georgia
Vincent Campbell, PhD
Centers for Disease Control and Prevention
1600 Clifton Road, N.E., E-88
Atlanta, GA 30333

Iowa brochure PDF
Paul Romitti, PhD
The University of Iowa
C21-E GH, 200 Hawkins Drive
Iowa City, IA 52242

Kathy Mathews, MD
The University of Iowa
College of Medicine
Department of Pediatrics
200 Hawkins Drive
Iowa City, IA 52242

New York brochure PDF
Charlotte Druschel, MD, MPH
Congenital Malformations Registry
New York State Department of Health
527 River Street, Room 200
Troy, NY 12080

Shree Pandya PT,MS
Department of Neurology
University of Rochester
Box 673, 601 Elmwood Avenue
Rochester, NY, 14642
 

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Date: September 1, 2006
Content source: National Center on Birth Defects and Developmental Disabilities