How is a disease nominated for newborn screening in BC?

• There is a formal process in British Columbia for individuals or organizations to nominate a condition for newborn screening. The process begins with the completion of a nomination form (Form 1).
  
• Completed nomination forms can be submitted to Newborn Screening BC via the Perinatal Services BC email (psbc@phsa.ca).
  

What happens when a disease is nominated?‎

• Once nomination forms are received, they are sent to the Medical Director to be reviewed and brought to the next scheduled Newborn Screening Advisory Committee (NSAC) meeting for consideration.
• The NSAC uses a discussion framework to determine whether the condition is a potential candidate for newborn screening and warrants further detailed review, or 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 NSAC decides that a more in depth review is indicated, a working group is established to review the evidence for screening for that disease using published literature and experience from other newborn screening programs. Once a fulsome review is complete (which can take several months), the working group presents their findings to the NSAC.
• Based on the findings of the working group, the NSAC either recommends screening for the disease, or does not recommend screening for the disease. NSAC may request additional information in order to make their decision.
  
• NSAC recommendations are sent to Newborn Screening BC as part of Perinatal Services BC (PSBC), who in turn are responsible for systems planning, operations, and health economics considerations. PSBC is then responsible for formal reporting to PHSA and the BC Ministry of Health for ultimate decision-making whether to approve and commit funding to screening for the disease.