The ScreeningThe process of testing for disease in a person who does not show signs of having the disease (nonsymptomatic or asymptomatic person). The goal of screening is to catch the disease in its early stages., Technology And Research in Genetics (STAR-G) Project began as a multi-state collaborative effort, led by the Hawaii Department of Health, to obtain research data, identify strategies, and develop materials for addressing the financial, ethical, legal, and social issues (FELSI) surrounding the use of tandem mass spectrometryA technology that may be used in newborn metabolic screening to test newborns for many different metabolic disorders. To do this, an instrument called a tandem mass spectrometer measures the level of certain compounds in the newborn’s blood. Too much or too little of these compounds could mean that the newborn has an inherited metabolic disorder. for neonatal metabolic screening of culturally and ethnically diverse populations. The project was funded by the Health Resources and Services Administration (HRSA) through a Special Projects of Regional and National Significance (SPRANS) grant. Six states participated in the STAR-G project: Alaska, California, Hawaii, Idaho, Oregon, and Washington.
STAR-G activities included:
- Convening focus groups of mothers to discuss the financial, ethical, legal and social issues surrounding expanded newborn screeningA screening test that looks for different disorders using a small sample of blood taken from a newborn’s heel. A positive or abnormal newborn screening result means that there are slight differences that were found in the baby’s blood, and further testing is needed to figure out if the baby has a metabolic disorder..
- Surveying parents about newborn screening educational materials.
- Developing disorder fact sheets for families and health care providers.
- Developing educational tools and guidelines for state newborn screening programs.
- Gathering data and analyzing the cost of active informed consentVoluntarily agreeing to do something after receiving and understanding all of the relevant information. Participation in all medical trials requires informed consent. for expanded newborn screening
The STAR-G Project officially ended in 2004, but the Western States Regional Genetics Network (WSRGN) continues to maintain and update the STAR-G website and parent fact sheets. The WSRGN includes the same six states originally involved in the STAR-G project with the addition of Guam. For more information about the WSGSC, go to: www.westernstatesgenetics.org.
This website contains information and products developed during the STAR-G project. For further information about the STAR-G project, please contact us.