NMD4C Investigators Submit Response to CDA Draft Guidance on NBS

On behalf of its Newborn Screening (NBS) Advisory Panel, Canada’s Drug Agency (CDA) 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 in response to this paper, providing an opportunity for the Canadian healthcare community to help shape the formation of these national NBS guidelines.

A group of NMD4C investigators submitted a response to this discussion paper, led by network co-lead Dr. Homira Osman, with input from neuromuscular experts including Dr. James Dowling, Dr. Hanns Lochmüller, Dr. Alex MacKenzie, Dr. Hugh McMillan, Dr. Maryam Oskoui, Dr. Kathryn Selby and Dr. Pranesh Chakraborty.

The author group noted that while the discussion paper from the CDA outlines important aspects of newborn screening, it fails to address critical issues related to infrastructure, national standards, and the integration of emerging technologies. The group identified that a broader approach is needed—one that encourages innovation, addresses systemic lab issues, and ensures equitable implementation across all provinces.

The authors recommended the creation of a national framework that sets minimum standards while allowing for the necessary flexibility to adopt new treatments and technologies as they become available. The system must be prepared for the future, and free from rigid processes that prevent timely advancements.

For any questions about future group recommendations from the network, please contact Dr. Homira Osman at .

newborn screening

Read next...

2025 Basic Research summer school to be held over May 7-8, 2025 at York University.

2025 NMD4C Basic Research Summer School to be Held at York University

Save the Date! We are thrilled to announce that we will be hosting our second annual basic research summer school for neuromuscular research trainees over May 7-8, 2025 at York University in Toronto, ON.

Call for applications to join the NMD4C trainee committee

Call for Applications: Join the NMD4C’s Basic Science Trainee Committee

We are excited to share an opportunity for Canadian neuromuscular trainees to help shape the NMD4C’s basic science trainee strategy by joining the NMD4C Basic Science Trainee Committee (BSTC)!

NMD4C honored to reveive 2024 Dr David Green Award for Excellene in Service Delivery from MDC

NMD4C Honored with Dr David Green Award for Excellence in Service Delivery at MDC Awards Gala

Dr Jodi Warman-Chardon accepted the 2024 Dr David Green Excellence in Service Delivery Award on behalf of the network at the MDC Awards Gala.

2024 NMD4C Annual Meeting

NMD4C Welcomed Investigators to Annual Meeting in Calgary

Thank you to our investigators who attended the Annual NMD4C Meeting on September 27th in Calgary! Our meeting program consisted of presentations from pillar and task leads which highlighted their groups’ achievements and progress made to date.

LEARNMD logo

NMD4C Launch Educational Platform LEARNMD

LEARNMD is an online educational platform offering talks and sessions on a wide range of neuromuscular topics presented by leading clinical and scientific experts worldwide.

CNDR logo4x3

October 2024 Updates from the Canadian Neuromuscular Disease Registry

The Canadian Neuromuscular Disease Registry (CNDR) is pleased to share updates on several exciting initiatives this fall!