Learning From Your Experience for a Brighter Future

What is the Newborn Screening Patient Registry?

The Newborn Screening Patient Registry collects health information from children with inherited metabolic disorders (IMDs) identified by newborn screening in New York State.

How does a child participate in the registry?

• A child can only participate in the registry if their legal guardian gives permission.
• The legal guardian signs the consent form, and the health care provider sends the form to the Newborn Screening Program.
• The child’s information is entered into the secure online system.

Why is the Newborn Screening Patient Registry important?

• Each individual disorder on the newborn screening panel is rare.
• It will give health care providers a chance to study information for a larger group of patients than they treat in their clinic.
• The information will help health care providers learn more about the diseases on the newborn screening panel and the best treatment.
• It will improve newborn screening for all babies in New York State.

What if I have questions about the registry?

You can call us at (518) 473-7552 or email nbsinfo@health.ny.gov.

Additional Resources and Links

• Long-Term Follow-Up Patient Registry Brochure
• Long-Term Follow-Up Patient Registry Sheet
• National Organization for Rare Disorders (NORD)
• Genetic and Rare Diseases Information Center (GARD)
• National Coordinating Center (NCC)
• The New York Mid-Atlantic Caribbean Regional Genetics Network (NYMAC)
• Parent to Parent of New York State
• Baby’s First Test
• New York State Individualized Education Program (IEP)
• New York City Individualized Education Program (IEP) Process
• Medicaid Health Homes: Comprehensive Care Management
• Medicaid Transportation