In collaboration with ALEC, the Department of Health, Disability and Ageing is conducting a scoping and feasibility study to better understand existing clinical guidance and current approaches to managing babies who screen positive for rare genetic conditions through newborn bloodspot screening (NBS).
The work aims to:
– identify and build on existing strengths in currently available guidance and models of care
– identify opportunities for further improvement
– understand the needs and experiences of clinicians and health services
– assess whether nationally consistent clinical guidance and support can be developed to promote equitable, high-quality care for affected babies and their families across Australia.
We are seeking input from those involved in the diagnosis or management of babies who screen positive through NBS. This includes healthcare professionals, researchers, laboratory specialists and policy and decision-makers.
The online survey takes 10-15 minutes to complete. Participation is voluntary and anonymous, and your contribution is greatly appreciated.
Survey link: https://monash.syd1.qualtrics.com/jfe/form/SV_ezlmEeW0WqPnlLU
