Preview
1. As part of developing pan-Canadian guidance on newborn screening, the advisory panel recommended 6 draft guiding principles and accompanying definitions to inform and shape decision-making when developing processes, criteria, and a proposed list of conditions to screen for newborns. These draft guiding principles are a core set of aspirational values that guide the advisory panel’s exploratory vision for a potential coordinated newborn screening system and activities. Please refer to Figure 1 and Table 1 in the discussion paper.
Do you agree with the proposed guiding principles and definitions?
2. The advisory panel explored a high-level vision for a coordinated newborn screening system. The intent of the proposed coordinated model is to complement jurisdictional newborn screening programs by supporting alignment across Canada, with provinces and territories retaining autonomy to tailor newborn screening programs to their local needs. Please refer to Figure 2 and Table 2 in the discussion paper for an illustrative example of a potential coordinated system.
Do you have any specific changes that you would recommend for the proposed approach to the potential coordinated structures for newborn screening?
3. The advisory panel recommended a process for adding or removing a condition that would begin with nomination. Each nomination would propose a target condition for addition or removal to/from a proposed future pan-Canadian newborn screening list and would include supportive information and/or evidence to justify the nomination, describing why the condition should be added or removed. The proposed nomination process and how it corresponds to the proposed guiding principles are described in Table 4 in the discussion paper.
Do you agree with the proposed process for nominating a condition?
4. Once a decision to review the evidence has been made, an evidence review is initiated to ensure that a comprehensive assessment of the available evidence for the nominated condition is summarized and reported. The proposed evidence review process and how they correspond to the proposed guiding principles are described in Table 5 in the discussion paper.
Do you agree with the proposed process for evidence review?
5. The evidence review will proceed to a proposed advisory body to deliberate and develop recommendations to add or remove a condition. The steps in the deliberation and recommendation process and how they correspond to the proposed guiding principles are described in Table 6 in the discussion paper.
Do you agree with the proposed processes for deliberating and developing recommendations?
6. The process for engagement and communication follows the development of the recommendations to add or remove a condition and is intended to provide an opportunity for broad engagement with interested parties and members of the public. The steps in the proposed engagement and communication process, and how they correspond to the proposed guiding principles, are described in Table 7 in the discussion paper.
Do you agree with the proposed process for engagement and communication?
7. The advisory panel proposed adopting 8 of the 10 criteria from Wilson and Jungner, with modifications, including being more specific in the articulation and interpretation of the criteria by drawing on how the criteria are interpreted and expressed by other newborn screening programs in Canada and internationally. Please refer to Table 9 in the discussion paper.
Do you agree with the proposed criteria for adding a condition to a proposed pan-Canadian newborn screening list?
8. The advisory panel proposed adopting the modified considerations for removing a condition that are used in Australia’s Newborn Bloodspot Screening Framework. These 13 questions cover similar domains to those in the Wilson and Jungner criteria with a focus on the impact of removing the conditions. Please refer to Table 10 in the discussion paper.
Do you agree with the proposed considerations for removing a condition from a proposed pan-Canadian newborn screening list?
9. The advisory panel is suggesting 25 conditions for a proposed pan-Canadian newborn screening list. The advisory panel also proposes conducting evidence reviews for 9 conditions to determine if they could be added to a proposed pan-Canadian newborn screening list in the future. Please refer to Table 12 and Table 13 in the discussion paper.
Do you agree with the proposed pan-Canadian newborn screening list?
10. The advisory panel discussed the need for early awareness on potential emerging conditions that are not yet screened for in Canada. An emerging condition may be one that has been added to, or is under review by, a newborn screening program in another country. It also can include conditions that have treatments in the pipeline that should be monitored. Please refer to Table 14 in the discussion paper.
Are there other emerging conditions that you would recommend the advisory panel to consider in their final report?
11. Are there any other comments that you would like to share with us?
