What is Muscular Dystrophy?
Muscular dystrophies are a group of progressive muscle disorders that result in the breakdown of muscle and loss of strength. The disorders are due to genetic mutation, and each type affects a specific group of muscles. Muscular dystrophy is seen in males and females of all races, with signs and symptoms appearing at different ages and varying in severity.
What is MD STARnet?
The Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) is a data collection and surveillance program that collects critical information about muscular dystrophy to improve care for those living with the disease. Funded by the U.S. Centers for Disease Control and Prevention (CDC), MD STARnet was established in 2002 in response to the MD Care Act of 2001 and is the only surveillance program designed to collect health information on everyone with muscular dystrophy living in specific areas of the United States.
MD STARnet: What are We Trying to Accomplish?
- Identify geographical distribution of individuals with selected muscular dystrophies and their access to care and resources
- Describe the natural history of each muscular dystrophy and factors associated with differences in presentation, treatment, and morbidity
- Monitor access to established standards of care
- Disseminate results to service providers, advocates, and policy makers
Why is MD STARnet Important?
MD STARnet collects information from medical clinics as well as other sources, including hospitals and birth and death certificates. By collecting health information on a large number of people from multiple sources, MD STARnet research can be used to help improve the care and quality of life for those living with muscular dystrophy. The more we know about the experiences of people with muscular dystrophy, the more we can learn about the course of the disease and what leads to a better quality of life.
Which States are Involved?
MD STARnet consists of seven currently funded sites: Northern Florida, South Carolina, Utah, Iowa, the Piedmont area of North Carolina, Virginia and Western New York.
Which Agencies in South Carolina are Involved?
South Carolina has active participation in this project from the Department of Health and Environmental Control (DHEC); the Health and Demographics Section of the Office of Revenue and Fiscal Affairs (RFA); the University of South Carolina Arnold School of Public Health (USC ASPH); and the University of South Carolina School of Medicine (USC SOM). Data collection for the project is carried out by DHEC (active data collection) and RFA (passive data collection). The USC School of Medicine has primary clinical review oversight of all data collection. The USC Arnold School of Public Health leads data analysis and interpretation of the results.
Data Collection: Timing, Study Population, and Method
Timing: The South Carolina MD STARnet project has been continuously funded since September 2014. The current cycle is 09/01/2019 - 08/31/2024. The SC MD STARnet team is collecting baseline and longitudinal surveillance data on individuals with MD that meet eligibility criteria.
Study Population: The MD STARnet sites collect data on individuals with eight major types of muscular dystrophy (MD), which are:
- Duchenne
- Becker
- Myotonic Dystrophy
- Congenital
- Limb Girdle
- Emery-Dreifuss
- Facioscapulohumeral
- Distal
Each of these muscular dystrophies vary by age of onset, muscle groups affected, genes involved, severity, and disease progression.
Method: South Carolina MD STARnet conducts longitudinal surveillance of muscular dystrophy under the authorization and protection of DHEC’s public health surveillance authority (SC State Statute section 44-1-110). Public health surveillance does not require consent from the patient and or their parent/guardian. The complete project protocol will be subject to DHEC and CDC Institutional Review Board review and approval.
Individuals with MD are ascertained from medical records or administrative datasets, such as state hospital discharge data. An MD STARnet abstractor (in South Carolina, our abstractors are licensed RN’s) reviews the medical records of each ascertained individual to evaluate their eligibility and abstracts data for eligible individuals. All data is coded with a unique ID to protect the patient’s privacy and confidentiality. Any and all information released from SC MD STARnet will be based on aggregated, de-identified data.
Questions
The best way to contact the South Carolina MD STARnet team is via e-mail at: berryrb@dhec.sc.gov
To learn more about MD STARnet in general, please visit the CDC’s Muscular Dystrophy Research and Tracking page.