VAHI is supporting the Department of Health and Human Services to evaluate the effectiveness of the Newborn Bloodspot Program – which tests babies for a number of rare but serious metabolic and genetic conditions. The treatment for these conditions needs to commence in the first days or weeks of life to significantly reduce deaths or long-term disability.
Through the program, babies are screened between 48–72 hours after birth using a heel prick bloodspot test. The bloodspots are sent to the Victorian Clinical Genetics Service for testing and results are then sent back to hospitals.
Currently the newborn bloodspot screening program can only count the number of bloodspot tests done, not the overall rate. This means services cannot be sure whether any babies missed out on being screened. VAHI is working with the Newborn Bloodspot Program on a pilot program that uses routinely collected hospital data to identify the number of newborns, so this in turn can be linked to the number of tests completed in the testing service.
With this data the Newborn Bloodspot Program will be able to see if it is reaching all newborn Victorians, and can provide feedback to health services if missing cases are identified.
The program target is for zero babies to miss out on being offered this essential disease screening. The health data element of the program is expected to play a major role in achieving this outcome.
For more information on the program, contact Dr Peter MacIsaac, Clinical and Informatics Advisor, at firstname.lastname@example.org