NMD4C to Prepare Response to Canada’s Drug Agency Newborn Screening Guidelines Discussion Paper
Canada’s Drug Agency (CDA) on behalf of its Newborn Screening (NBS) Advisory Panel recently published a discussion paper outlining its approach for developing Canadian newborn screening guidance. The goal of this discussion paper is to outline the foundations for a set of national guidelines for provincial and territorial governments to inform the development of their NBS programs. CDA have issued a call for input from healthcare specialists in response to this paper, providing an opportunity for the Canadian healthcare community to help shape the formation of these national NBS guidelines.
The NMD4C is pleased to advocate for the expanded inclusion of neuromuscular diseases and genetic screening in these guidelines on behalf of the Canadian neuromuscular community and will submit a response to this discussion paper. Led by network co-lead Dr. Homira Osman, with input from neuromuscular experts and network investigators including Dr. James Dowling, Dr. Hanns Lochmüller, Dr. Alex MacKenzie, Dr. Hugh McMillan, Dr. Maryam Oskoui, Dr. Kathryn Selby and Dr. Pranesh Chakraborty, the group will provide recommendations reflecting the need for expanded inclusion of neuromuscular conditions and genome sequencing in Canadian NBS programs.
The deadline for submitting our response is September 11, 2024. If you are interested in contributing to the author group and helping to shape the network’s response, please contact Dr. Homira Osman at .