Autism Spectrum Registry
Information about the NH Registry for Autism Spectrum Disorders
In accordance with RSA-A:30,31, the New Hampshire Department of Health and Human Services has established this online Autism Registry, in order for providers who diagnose new cases of autism to register their findings.
In response to concerns with the increasing incidence of Autism Spectrum Disorders (ASD), the New Hampshire Legislature, in early 2008, approved He-M 501, a rule establishing and implementing a state autism registry. Statutory authority had been granted in 2006, with the approval of RSA 171-A:30, 31.
The rule requires all health care and other providers who are qualified to make a diagnosis of autism spectrum disorder to record their findings when a new case of ASD is diagnosed in a New Hampshire resident.
Why does NH have a registry for Autism Spectrum Disorders?
The impetus for the NH Registry originally came from the parents of children and young adults with ASD. They, along with the then President of the Autism Society of New Hampshire, worked in collaboration with legislative sponsors to craft HB 1709. This effort was supported by public agencies that provide services to children, teens and adults with ASD. The desire was to create a tool to provide data which could be used for planning for future needs of the ASD population, in understanding patterns in diagnostic assessment, and to gain knowledge on efforts to increase early identification of ASD in young children.
New Hampshire was the second state in the nation to establish a legislatively mandated, state-wide registry for ASD. As other states follow with similar registry procedures, the resulting data may provide information to better understand the incidence of ASD and how healthcare systems can best insure early and proper identification.
How common are Autism Spectrum Disorders?
Currently, about 1 in 44 children has been identified with ASD, according to estimates from the Centers for Disease Control's Autism and Developmental Disabilities Monitoring (ADDM) Network. It is reported to occur in all racial, ethnic, and socioeconomic groups, and is more than 4 times more common among boys than among girls. Go to the CDC’s site to read more: https://www.cdc.gov/ncbddd/autism/data.html
Autism Registry Reporting Information
Who Reports to the NH Registry for Autism Spectrum Disorders?
Under He-M 501.02(f), reporting is mandatory for "any physician, psychologist, or other licensed or certified health care provider who is qualified by training to make the diagnosis of ASD." This would include pediatricians, family physicians, psychiatrists, neurologists, licensed clinical psychologists, and social workers.
How Does a Clinician Report a New Diagnosis?
Clinicians must report using the electronic form on the NH ASD Registry website.
If you are having trouble, please contact Erika Downie, Bureau for Family Centered Services, at (603) 271-4533 or email Erika.B.Downie@dhhs.nh.gov.
What Diagnoses are Included in the NH Registry for ASD?
For purposes of this registry, an autism spectrum disorder diagnosis must meet the standardized diagnostic criteria for ASD in the American Psychiatric Association's Diagnostic & Statistical Manual, Fifth Edition (DSM-5). Additional eligibility criteria apply:
- The NH Registry applies to all cases where a definitive diagnosis has been made. Suspicion of ASD and provisional diagnoses should not be reported.
- Diagnoses made prior to November 1, 2008 should not be reported.
- The person with the disorder must also live in the state of New Hampshire at the time the diagnosis was made to be considered for the NH Registry for ASD.
- The age of the individual and the presence of co-occurring conditions do not rule out the requirement to report the diagnosis.
What is a registry?
A registry is an organized system for the collection, storage, retrieval, analysis, and dissemination of information on individuals who have a particular disease, a condition (e.g., a risk factor) that predisposes to the occurrence of a health-related event, or prior exposure to substances (or circumstances) known or suspected to cause adverse health effects. There are registries for many diseases, conditions and events (i.e. cancer, lead poisoning, influenza and birth defects including Down's syndrome). Without these registries, it would be impossible to understand the magnitude of a health problem and its impact on the public.
Additionally, information about when a diagnosis is made and by what type of medical professional can help policy makers understand the ways in which health systems are meeting important goals. For example, the age of diagnosis – and therefore the beginning of medically necessary treatment – is an important predictor of improved outcomes for children with autism spectrum disorder (ASD). Many professionals concerned with children’s health in NH are not only interested in how many children are being diagnosed with ASD in our state, but at what age clinicians are typically making a confirmed diagnosis and whether there are regional or other differences in the average age of diagnosis
Why is there a need for a registry for autism spectrum disorders?
There are a number of registries for ASD throughout the United States. Most are affiliated with an effort by the Centers for Disease Control to pinpoint the prevalence of ASD – that is, how common this health condition is in the general population – and whether this rate is increasing. These registries track the number of children diagnosed on the spectrum at the age of eight years within a specific area, usually several counties of a participating state.
New Hampshire has taken a slightly different approach. The NH Registry for ASD it is designed to answer three important questions:
- How many individuals are diagnosed each year in NH, regardless of age?
- At what age is the diagnosis typically made?
- And, when considering factors such as geographic region or the type of healthcare professional making the diagnosis, are there patterns that tell us more about how NH families access early developmental screening and evaluation.
While the NH Registry will contribute to our understanding of the prevalence of ASD in NH, the primary focus is on assessing whether early identification, screening, and ultimately diagnosis are taking place throughout NH. The information collected by the NH Registry will help policy makers to understand where there may be gaps in NH’s system for screening and diagnosing children with apparent developmental delays that may be indicative of ASD
How does the NH Registry help individuals with autism and their families?
The law to create the NH Registry for ASD was initiated by parents through the Autism Society of New Hampshire and other advocacy groups. Until recently, autism and related conditions were thought to be relatively rare. While promising initiatives like the Combating Autism Act of 2006 signal a recognition of this important issue at the federal level, funding for both research and treatment continue to lag behind that appropriated for many other, less common, conditions. Data from the NH Registry will have an impact on federal and state efforts regarding education in public schools, developmental services, community mental health, vocational supports and even insurance coverage.
Will the name of the individual with an autism spectrum disorder appear in the registry?
No, names are not being collected. There is no need to know the name of the individual in order to achieve the goals of the NH Registry. There is a need to protect against duplication (for example, if a person receives a diagnosis by two or more diagnosticians, as families sometimes seek a second opinion), therefore the healthcare professional reporting will use a designated standard method of coding each case that will allow the names to remain confidential.
Who will have access to the information collected in the NH Registry for ASD and how will this information be used?
The total number of new cases of ASD diagnosed each year will be shared with a variety of agencies that need this information for planning services and supports for individuals with ASD. The information will also be broken down (aggregated) by the age of diagnosis, the region in which the child lives, and the type of healthcare professional making the diagnosis. Among the agencies interested in the data collected by the NH Registry are the NH Bureau of Developmental Services, the Department of Education’s Office of Special Education, the Bureau for Family Centered Services and the Bureau of Behavioral Health. Annual results will also be published on this website. It is important to know that no individual data will ever be reported. Any results reported will be across a group of individuals.
Is this ASD registry legal? If an individual receives a diagnosis, does he/she have to be included in this registry?
Yes, the NH Registry for ASD is legal. Autism Spectrum Disorders are named a reportable condition under the New Hampshire Department of Health and Human Services, Administrative Rules Unit, He-M 501, adopted May 16, 2008. This addition to the rules was mandated by state law RSA 171-A:30, which was adopted by the NH legislature and signed into law by Governor John Lynch in 2006.
Will the families of those in the registry ever be contacted for more information or about participation in research because they are in the registry?
No, there would be no way to know who to contact. The Registry does not collect name, address or phone number.
How is an individual reported to the NH Registry?
The clinician or other healthcare provider who made the definitive diagnosis of ASD completes a short registry report form. The diagnostician indicates what the diagnosis is, the individual’s date of birth, the date of the diagnosis, and the individual’s NH town of residence. The form can be completed by office support staff and should take less than five minutes.
If an individual was diagnosed with an autism spectrum disorder when they were living in another state, should it be reported?
No. Only patients who live in NH at the time of diagnosis are to be registered.
Should only diagnoses made for children be reported?
No, the NH Registry for ASD collects all new diagnoses, regardless of the age of the patient, provided the individual is a NH resident at the time the diagnosis was made.
If an individual receives an ASD diagnosis from a facility outside of New Hampshire, must that diagnosis be reported to the NH Registry for ASD?
Yes. Anyone who both resides in New Hampshire and receives a qualifying diagnosis after Nov. 1, 2008 should be reported to the NH Registry for ASD, regardless of where they received the diagnosis. For this reason, the NH Department of Health and Human Services is making every effort to reach out to diagnosticians in border states. Additionally, we would appreciate it if NH primary care physicians report cases where an out-of-state specialist has made the diagnosis. The registry is designed to eliminate duplicate entries, so primary care providers may register a patient without fear that this will corrupt the data.
Does the New Hampshire Registry for ASD comply with HIPAA?
Yes. Registries are considered public health authorities because their duties are mandated by state laws.
Under HIPAA, a “Public Health Authority” is defined as “an agency or authority of the United States, a State or territory, a political subdivision of a State or territory, or an Indian tribe, or a person or entity acting under a grant of authority from or contract with such public agency, including the employees or agents of such public agency or its contractors or persons or entities to whom it has granted authority, that is responsible for public health matters as part of its official mandate.”(1)
As a “Public Health Authority”, registries are “… authorized by law to collect or receive such information for the purposes of preventing or controlling disease, injury, vital events such as birth or death, and the conduct of public health surveillance, public health investigations, and public health interventions.” (2)
(1) C.F.R. 164.501
(2) C.F.R. 164.512