TRENTON, NJ – In the interest of clarity and transparency, the New Jersey Department of Health (NJDOH) issues the following statement regarding the NJ Autism Registry, particularly in response to questions about privacy and federal involvement:

• The Registry is a vital tool that helps us understand autism in New Jersey and improve planning and services that support children and families.
• Being listed in the NJ Autism Registry can help families connect to free, county-based case management services, available through age 22.
• The Registry was established by state law in 2007 and is not federally funded.
• By law, Registry data cannot be made public in any way that could identify a person.
• The Registry has never shared individual-level or identifiable data with federal agencies or studies, including the CDC’s autism research. We share only summary data, that does not identify any individual, to protect privacy.
• Parents or guardians may choose to have their child listed anonymously in the Registry at any time—even if the child was originally reported by name. The process is secure, requires proof of identity, and protects families from unauthorized changes.

This information is deeply personal. Now more than ever, families deserve reassurance that the NJ Autism Registry exists to support them. Privacy, safety, and trust are at the core of how we manage all NJ Autism Registry data.