Test Addition Process

How is a disease nominated for newborn screening?

• There is a formal process in Ontario to nominate a condition for newborn screening. The process begins with the completion of a simple nomination form.
• Individuals or organizations can nominate a condition. 
• Submit completed nomination forms to the Newborn Screening Ontario Advisory Council (NSO-AC) by e-mail to nsoac@cheo.on.ca

What happens when a disease is nominated? 

• Once NSO receives a nomination form, it is sent to the Chair for review at an NSO-AC meeting. The NSO-AC may consider the nomination, and/or refer it to the Maternal Child Sub-Committee of the Provincial Council for Maternal and Child Health. 
• The NSO-AC uses the committee discussion framework to determine whether a) the condition is a potential candidate for newborn screening and warrants further detailed review, or b) the condition is not an appropriate target for newborn screening at the time. A formal response is communicated back to the nominator following this meeting. 
• If the NSO-AC decides that further review is needed, a task force is struck. The task force will review the evidence for screening for that disease using published literature and experience from other newborn screening programs. Once the full review form is complete (which can take several months), the task force presents their findings to the NSO-AC. 
• Based on the findings of the task force, the NSO-AC: 

1. 1. recommends screening for the disease,
   2. does not recommend screening for the disease, or
   3. requests more information to make their decision.

• The NSO-AC may engage with other provincial partners during or after the above process to further inform or refine recommendation(s). 
• If the NSO-AC makes a recommendation to begin screening for a disease, a formal report is sent to the Government of Ontario, which makes the ultimate decision whether to approve and fund screening for the disease.

For more information on other activities of the NSO-AC, please visit our NSO Governance page or contact the NSO-AC by e-mailing nsoac@cheo.on.ca.