Consultation: Discussion Paper on Proposed Approaches to Newborn Screening Guidance

Current consultation status: Open 
Consultation period: July 11, 2024, to September 11, 2024

Canada’s Drug Agency is developing pan-Canadian guidance to support decision-making related to newborn screening. This work is being led by our Newborn Screening Advisory Panel and supports the Government of Canada’s National Strategy for Drugs for Rare Diseases.

The advisory panel has developed a discussion paper outlining its approach for developing the guidance, including the foundational elements that will underpin the final recommendations, such as developing a proposed common set of guiding principles for newborn screening, exploring a proposed process and criteria for adding or removing conditions, and recommending conditions that newborn screening programs in Canada could screen.

Newborn screening refers to tests done shortly after birth to check for serious but treatable diseases. It plays an important role in the early identification of rare diseases, which may lead to more timely diagnosis and appropriate access to drugs and other treatments, as well as other supports, early in life.

The draft discussion paper is now posted for consultation with all interested audiences.

Goals of the Consultation

The goal of the consultation is to promote dialogue and gather feedback about each of the foundational elements outlined in the discussion paper. The comments will inform the final guidance document that will be submitted to Health Canada, shared with provincial and territorial governments, and published on our website.

How to Participate

Download the discussion paper to read the panel’s proposed approach to developing the guidance and to view the questions we are asking. All contributors must submit their feedback electronically using our electronic form. The deadline for submissions is September 11, 2024.

By submitting written feedback, interested parties agree to full disclosure of the information. Submissions received will be posted on our website; however, no personal information will be posted. A summary of what we heard during the consultation period will be presented in a webinar in the winter of 2025. Contact [email protected] if you have questions.