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Newborn screening dashboards present clinical data collected by the Division of Newborn Screening & Genetics as part of the newborn screening and confirmatory testing done in Pennsylvania. They serve as an interactive tool for exploring the number of babies screened for a specific condition, results of the screening, number of babies referred to treatment centers and specialists for confirmatory testing and assessment, number of confirmed cases of the disorders, and prevalence in terms of gender, race, ethnicity, and location (county and zip code) of maternal residence. Dashboards include data collected over multiple years.  For each visual, you can choose to view the data for a specific year or compare data across calendar years.

These dashboards are refreshed and updated every morning at 6 am. 

Note: Dashboards do not load properly in Internet Explorer.  It is recommended to use Chrome, Edge, or Firefox to view a dashboard.

Where can I get more information?

If you have any questions or need technical assistance to understand and analyze the data, please call the Pennsylvania Department of Health's Newborn Screening and Follow-Up Program at 717-783-8143.

Critical Congenital Heart Defects (CCHD) Dashboard

Congenital heart defects are the most common type of birth defect in the United States, affecting approximately 1 in every 100 newborns. Pennsylvania’s newborn screening program has been screening for seven CCHDs since March 2013. The CCHD Dashboard provides results from the pulse oximetry screening performed between 24-48 hours of life and prevalence of cases diagnosed with the seven CCHDs. It also provides annual trends for births, pulse ox screenings and diagnoses.

Cystic Fibrosis (CF) Dashboard

Cystic fibrosis is a progressive, genetic disorder that affects the lungs, pancreas, and other organs. It changes a protein in the body to make abnormal mucus that is thick and sticky. This mucus builds up in the body, making it hard for the baby to breathe or digest food. If not treated early, the baby is at risk for lung disease, malnutrition, and dehydration, possibly leading to death. The CF Dashboard provides data visualizations from the multistep process involved in diagnosing CF, including the newborn screening, sweat chloride testing, genetic or carrier testing, and clinical evaluation. It also includes timeliness data from the time a baby is born to when they are diagnosed with CF and when the treatment is started.   

Hearing Screening Dashboard 

The Hearing Screening Dashboard presents clinical data reported to the Pennsylvania Hearing Screening and Intervention program. It provides a snapshot of the inpatient (IP) and outpatient (OP) screenings performed by the hearing screening providers, and the timeliness of the screenings and their reporting, following standards consistent with The Infant Hearing Education, Assessment, Reporting and Referral (IHEARR) Act (Act 89 of 2001).

Lysosomal Storage Disorders (LSDs) and X-linked adrenoleukodystrophy (X-ALD) Dashboard

Lysosomal storage disorders develop because of an enzyme deficiency or malfunction that causes cell waste to build up within the cell instead of being excreted.

Adrenoleukodystrophy (ALD) is a rare, X-linked disease caused by a genetic mutation, and is more common in males than females. X-ALD occurs when certain fats cannot be broken down in the body. These fats build up and cause issues. If left untreated, a person with adrenal insufficiency may go into a coma.

Early detection and diagnosis of LSDs and X-ALD are paramount to ensure timely intervention before irreversible symptoms occur. The LSDs and X-ALD Dashboard is an interactive tool for exploring different facets of newborn screening and prevalence of LSDs and X-ALD in Pennsylvania.

Spinal Muscular Atrophy (SMA) Dashboard

SMA is an inherited (genetic) condition that affects the nerve cells of the spinal cord that control the muscles used for activities such as breathing, crawling, and walking. In SMA, baby’s body cannot make enough survival motor neuron (SMN) protein needed by the nerves to work correctly. Babies with SMA experience worsening muscle weakness and atrophy (wasting) over time. The SMA Dashboard provides data from the dried blood spot screening done at the time of  birth to detect change in SMN1 gene and further genetic testing done to determine the SMN2 copy number, which is an indicator for severity of SMA.