Nominate a NBS Condition
The Indiana GNBS program follows an established process to guide the nomination and addition of newborn screening (NBS) conditions to the Indiana program. This process allows for consideration and voting by various NBS stakeholders, including medical experts and specialists, before a recommendation is made to the health commissioner. The health commissioner then determines whether to add the condition to Indiana’s newborn screening panel.
The NBS condition nomination process begins when either the public, or a member of the legislature, requests to add a condition to the NBS panel.
Nomination from the Public: If you are an Indiana resident you may fill out and submit a Condition Nomination Form. Before completing the Condition Nomination Form, review the criteria for the addition of NBS conditions to the IN NBS Panel below.
A nominated condition must meet the following five (5) criteria to be eligible to be added to the IN NBS Panel:
Criteria for the addition of NBS conditions
Criterion 1: Mandated screening should be limited to conditions that cause serious health risks in childhood that are unlikely to be detected and prevented in the absence of newborn screening.
Does this condition cause serious health risks that, without newborn screening, would go undetected until symptom onset in childhood?
Criterion 2: Conditions identified by newborn screening should have safe, effective, and approved treatment options available to all Indiana patients.
Are there safe, effective, and approved treatment option(s) available to all patients in Indiana?
Criterion 3: Mandated screening for a condition should be affordable, feasible, and effective.
Is the screening for this condition affordable, feasible, and effective?
Criterion 4: Conditions identified through newborn screening should have an approved confirmatory test that is feasible and available to all patients.
Is the approved confirmatory testing for this condition feasible and available to all patients in Indiana?
Criterion 5: Long-term management and care for the condition should be readily available to all patients and shown to improve quality of life.
Is long-term management and care for the condition readily available to all patients in Indiana?
Once a condition is nominated, it will be reviewed by a subcommittee of the Indiana Perinatal Quality Improvement Collaborative (IPQIC) Perinatal Genetics & Genomics (PGG) Taskforce. This task force advises the GNBS Program. The subcommittee will evaluate whether the condition should be added based upon the criteria above. If it is recommended that the condition should be added, the subcommittee will recommend to the Indiana Health Commissioner approval for the addition of the nominated condition.
To remain transparent with all NBS stakeholders, all condition nominations and the determinations will be listed on this website:
Status and Determination
If you have any questions regarding the NBS condition nomination process or previous determinations, please contact the GNBS Director, Allison Forkner, at AForkner@isdh.in.gov.
Page last revised 11/05/2021 by JWeaver