Tracking Louisiana Newborn Screening Conditions

Procedure for Adding New Conditions to the Louisiana Newborn Screening Panel

1. Panel Adds Screening:

   • The National Advisory Committee on Heritable Disorders in Newborns and Children recommends the condition for addition to the Recommended Uniform Screening Panel.

   • The Secretary of Health and Human Services approves the condition for inclusion in the Recommended Uniform Screening Panel.

2. Review by the Advisory Committee:

   • The Louisiana Genetic Diseases Advisory Committee meets quarterly to review the science and cost-benefit of adding new conditions.

   • Consideration to add the condition is given to the testing methodology, treatment, and cost.

3. Leadership Advancement:

   • The Genetic Diseases Program shares the Genetic Diseases Program Advisory Committee’s recommendations with the Surgeon General and leadership at the Office of Public Health and the Louisiana Department of Health for review and approval.

   • The laboratory prepares for pilots and validations.

   • The Genetic Diseases Program initiates preparation for follow-up systems.

4. Legislative Advancement:

   • The department initiates rulemaking for adding the condition to the Newborn Screening Rule (LAC 48.v.6303).

   • The department initiates a request for budget appropriation (if applicable).

5. Implement:

   • The Genetic Diseases Program finalizes the process for reporting and follow-up.

   • The laboratory completes validation studies and secures external laboratory support, if needed.

   • Communicate with healthcare providers, systems, advocates, and other constituencies.

   • Testing “goes live” once the updated rule is promulgated.