NDHIN teamed up with the North Dakota Newborn Screening (NBS) Program to launch a new module that supports long-term follow-up services for children diagnosed with genetic and metabolic disorders.Enrollment into the program is triggered by confirmed positive results to lab tests performed at birth.  

The NBS team performs an initial assessment to collect information on the following:

  1. Nutrition  
  2. Interventions  
    1. Feeding change: food/formula
    2. Feeding change: timing/frequency
    3. Airway clearance techniques
    4. Surveillance/observation
    5. Isolation
    6. New Medication
    7. Hospitalization
    8. Other
  3. Treatment
    1. Prophylactic antibiotics
    2. Blood transfusions
    3. Prescribed analgesic (pain crisis)
    4. Medical supplements
    5. Medical foods
    6. Nebulizer/breathing treatments
    7. Research trial
    8. Bone marrow transplant or stem cell transplant
    9. Other
  4. Durable Medical Equipment (DME)  
  5. Developmental milestones  
  6. Barriers to receiving care:  Any issues in securing coverage, transportation, accessing necessary medications/treatments, scheduling appointments, etc.

Subsequent visits are scheduled to collect additional information through age 6. The focus of the long-term follow-up is to ensure that families are getting needed support and are connected to the right community services.

The NBS module also includes: 

  1. Care planning tool 
  2. Problem list   
  3. Expanded use of Circle of Care  

The Newborn Screening Long-term Follow-up (LTFU) program documents are now available in the Patient Summary in the Newborn Screening folder for Primary Providers and Nurses.  These documents include an initial assessment and quarterly follow-up LTFU checks.

NBS is seeking locations at which telehealth visits can be scheduled for this program to reduce travel and expenses for families. 

For additional information, please contact Joyal Meyer at