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37
How many rare diseases Illinois screens for
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3
Rare diseases missing: MLD, Duchenne, GAMT
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2-6 months
How long results are stored
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$128
Required screening fees (see statute below)
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418
Estimated diagnoses
Screening in Illinois
Does the state have a NBS Advisory Council?
Yes
How is screening funded?
Screen Funds, Metabolic Screening & Treatment Fund
Where are the laboratory facilities?
IL Public Health Chicago Laboratories
Where can I learn more?
More about Illinois’s Newborn Screening Program
Dried Blood Spot Explained
While most dried blood spots are stored for only 2 months in Illinois, abnormal results are stored for 6 years.
Screen Fees Explained
Newborn screening fees cover the costs of specimen collection and follow-up services.
Statutes & Regulations
Statutes & Regulations Explained
Statutes and regulations are the collection of rules that govern all newborn screening program components. This includes diseases found on the state screening panel, reporting of test results, newborn screening program guidelines, state committee guidelines, and fees. Statutes and regulations are both enforced under full authority of the law.
Statutes are laws enacted by the state legislative body and signed into law by the governor. They are broadly enforced across the entire state. Regulations are created by state agencies, under authority from statute, to oversee the specific area of the state. For example, a statute will authorize the ability to create a newborn screening fee and the regulation will determine the amount of the fee.
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With appropriate resources, the Rare Disease Innovation Hub can continue to transform how rare disease community stakeholders, clinical and scientific experts, and product developers engage with the FDA.
