Autism Registry Regulations Are Going Into Effect

In 2005 ASD was the driving force to pass legislation to create an autism registry of information about the prevalence of autism spectrum disorders in the State of Delaware. The Delaware Division of Public Health has finalized the regulations and we are moving towards implementation of the new autism registry law in January 2006.

What will the autism registry do?

The registry will collect information on diagnoses of autism spectrum disorders for children from birth through age 17. Qualifying individuals will be included in the registry after their diagnosis are  reported by doctors, other health care practitioners, hospitals, and clinics. Reportable diagnoses are those used by the International Classification of Diseases (ICD) that is used by the CDC; the Pediatric Association system (BPA/ICD-9), or the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) These diagnosis are widely used by the mental health and educational community.

Is reporting required?

Yes. Reporting is required by any physician (including psychiatrists) or other health care practitioner including clinical and school psychologists, speech and language pathologists, licensed clinical social workers, and nurses, including school nurses who make a diagnosis. In other words, any associated health care professional who diagnoses  a child with autism is required to make a report. This includes testing services (called clinical laboratories) that make formal assessments through testing, and hospitals as well. The State has developed a one-page easy to use form for reporting purposes. Reporting must be done within 30 days of the diagnosis and a continual annual reporting of the diagnosis is required in an effort to keep the registry current.

Why is this necessary?

The intent is for the registry to gather information that assists with estimating prevalence, identifying potential clusters (meaning a greater than typical occurrence of the disability in a specific geographic area), identifying risk factors, and eventually, in reviewing outcome information. As we all know, research in autism remains in the early stages and continues to be funded at lower rates than other disabilities or diseases that are much less prevalent. A registry will collect information that can be used both for research and for planning. With the growth in numbers, both schools and adult services have been struggling to meet the demand. Better information about the number of children with autism will allow for better planning and services for children and adults.

How is confidentiality maintained?

The registry will include access to medical information; however, no reporting will be allowed that will identify a child or family. One of the strongest reasons that the Autism Society has supported the concept of the registry is due to the increasing problems that major research institutions have in gaining access to critical medical and other information relating to individuals with autism.  The American Health Insurance Portability and Accountability Act of 1996, known as HIPAA, was created to ensure that all medical records, medical billing, and patient accounts meet consistent standards regarding documentation, handling and privacy. Confidentiality is very important, but in practice, HIPAA can stand in the way of research. By having a registry of all individuals with autism, researchers will have better access to more accurate data.