MD STARnet PROJECT
What is MD STARnet?
MD STARnet, the Muscular Dystrophy Surveillance Tracking and Research Network, is a program set up by the Centers for Disease Control and Prevention (CDC) in several states to identify all children with Duchenne and Becker Muscular Dystrophy (DBMD).
Currently, CDC works with Arizona, Colorado, Georgia, Iowa, and New York State on this project. Hawai‘i was newly added to the team in September 2008.
What is Hawaii MD STARnet?
The Hawaii Muscular Dystrophy Surveillance, Tracking, and Research Network (Hawaii MD STARnet) Project will contribute to the common goal of MD STARnet: to identify all children with DBMD in defined geographic areas. The MD STARnet network intends to answer the following questions:
- How common is DBMD?
- Is DBMD equally common in different racial ethnic groups?
- What are the early signs and symptoms of DBMD?
- Do factors such as type of care or type of mutation affect progression of DBMD?
- What services are families receiving?
- Do different populations receive different care?
Data on these children and individuals will be gathered by trained abstractors via chart review, family interviews, and long term follow-up of participating families. This data will then be de-identified and transferred to the national MD STARnet database.
Who are involved in Hawaii MD STARnet?
This is a collaborative project involving representatives from Department of Health Programs (Birth Defects, Children with Special Health Needs, and Early Intervention Services), Muscular Dystrophy Association (MDA) clinics, Shriners Hospital for Children, Tripler Army Medical Center, Kapiolani Medical Center, Queen’s Medical Center, private neuromuscular clinics, and other pediatric and neurological practices located in Hawaii and Guam.
What are the expected benefits of Hawaii MD STARnet?
The aim of this project is to increase the number of Asian and Pacific Island participants within the existing study population. Data gathered by project staff will characterize the complications and long term outcomes of individuals with DBMD who are geographically isolated and may face unique barriers. In addition, the project will describe the history and outcome of individuals with DBMD who receive different levels of medical and preventative care while developing a long term surveillance system for these families. Finally, the culture of Hawaii and Guam may provide insight into unique methods of caring for children and families with DBMD.