Newborn Screening for Metachromatic Leukodystrophy

As a part of the Government of Canada’s National Strategy for Drugs for Rare Diseases, Canada’s Drug Agency supported the development of pan-Canadian guidance for newborn screening. The overall goal of the guidance is to help foster greater consistency in the types of conditions tested and screened for in newborns across Canada, leading to earlier identification and the potential for more timely and appropriate access to effective treatments and interventions.

Building on this guidance, we are conducting a series of activities designed as learning opportunities, which will explore the development of high-impact reports and tools to support the following objectives:

• developing a process for horizon scanning to anticipate emerging candidate conditions for newborn screening in Canada
• working with experts to develop a glossary of terms for newborn screening and pan-Canadian case definitions for select primary newborn screening conditions
• piloting the Newborn Screening Advisory Panel’s recommended process and criteria for adding a condition by reviewing and making recommendations.

For detailed information on these projects, including their current status, visit our Drugs for Rare Disease webpage.