Volume 17, No.3, August 2007

The Interactive Autism Network-Missouri Registry (IAN-MO): A State Model for Improving Services and Research

Contributors:
Janet E. Farmer, Ph.D., Professor and Director MU Thompson Center for Autism and Neurodevelopmental Disorders

Imagine waking up one day. You notice your child is not looking at you or answering when you call his name. His smile has faded away and he plays for hours with a short piece of string or a spinning toy. No longer interested in you, he seems to be content to be alone in his own world. Imagine waking up and realizing your child has autism.

Background
Families of children with autism spectrum disorders (ASD) need comprehensive and coordinated services that are easily accessible. However, the service delivery system is fragmented, and families report many barriers to adequate care. State agencies often lack basic information that would allow them to improve the organization and delivery of services.

A new solution will support the development of a more effective service delivery system in Missouri. The state Department of Mental Health/Division of Mental Retardation and Developmental Disabilities (DMH/MRDD) is partnering with the Interactive Autism Network (IAN) to create a method of tracking the state’s prevalence of ASD and to identify existing services and supports. Created by faculty from Kennedy Krieger Institute in Baltimore, Md. with funding from the Autism Speaks Foundation, IAN is a voluntary online national registry designed to accelerate the pace of autism research and treatment. Parents of children with ASD under age 18 have the opportunity to contribute substantially to research efforts about this condition.

Significance
One of the major factors limiting advances in autism treatment is the lack of basic information about the disorder. Little is understood about the true prevalence of ASD, causes of the disorders, effective interventions, or ways to translate research into community-based practice. In Missouri, a coalition of researchers and state agency personnel laid out a plan for the Missouri Autism Project Registry in 2005. The University of Missouri-Columbia (Janet Farmer, Ph.D., PI) was charged with helping the state implement this plan. The specific aims of this voluntary state registry plan were:

• To serve as a core component of a comprehensive system for large-scale tracking of ASD prevalence in Missouri
• To further advance knowledge about causes and treatments by attracting potential participants to enroll in qualified research studies of ASD
• To assess variations across Missouri regions in the availability of specific interventions and services and to analyze responses to interventions for autism for the purpose of informing public policy.
• To provide the added benefit of supportive, relevant autism information for families, health care providers and educators that will attract users to the site.

At about the same time that this plan developed in Missouri, Autism Speaks provided $2.26 million to Kennedy Krieger Institute in Baltimore, Md, to develop the Interactive Autism Network (IAN; Paul Law, MD, PI). This project aimed to meet goals much like Missouri’s by developing a voluntary online national autism registry to accelerate the pace of autism research and evidence-based treatment. Funding for IAN brought together a cadre of experts in the areas of medical informatics, database development, marketing/publicity, autism spectrum disorders, child health, and the family perspective. These experts worked intensively on developing a registry that has broad appeal to consumers and family members, researchers, health care professionals, educators, and others in the autism community.

Pilot testing of IAN began in August, 2006, and the national registry was officially launched on April 2, 2007. Parents report child data about autism type, onset, co-morbid conditions, treatments, and response to interventions, along with characteristics of parents and siblings (data collection forms are available on request). With appropriate levels of confidentiality for enrolled families, IAN data can be accessed by the general public, policy analysts and researchers.

Goal of the IAN-MO Project
In order to prevent duplication of effort and to maximize the potential for advances in autism research and treatment, Farmer, Law and other Kennedy Krieger leaders met to discuss opportunities for collaboration between IAN and the state of Missouri on July 18, 2006. As a result of this meeting, the University of Missouri-Columbia (MU), the Missouri Department of Mental Health/Division of Mental Retardation and Developmental Disabilities (DMH/MRDD), and Kennedy Krieger Institute created a partnership called the IAN-MO Project. The goal of this project is to develop a model of how states can utilize IAN to track the prevalence of ASD, enhance autism research and evidence-based treatment, and provide family supports.

Subsequently, Robin Rust, Department of Mental Health Principal Investigator for the Real Choice Systems Change grant from the Centers for Medicare and Medicaid Services, provided funding to MU to launch IAN at the state level in order to reach the goals set out for the Missouri Autism Project Registry. Because Missouri was viewed as a leader in the development of the national autism registry, Farmer was asked serve on the IAN Scientific Advisory Council along with five other experts from across the country.

Progress to Date
Aim 1. To develop an ASD registry that will serve as a core component of a comprehensive system for large-scale tracking of autism prevalence in Missouri.

The focus in the past year has been on data collection strategies that can inform large-scale, longitudinal tracking studies. Dr. Farmer assisted the IAN faculty with the development of core database items for children 0-17 years with autism spectrum disorders and their family members. She also reviewed researcher procedures and policies (e.g., IRB consent) used for the national ASD registry. These elements must be in place for the success of the IAN-MO project.

Since its launch in April, 2007, more than 15,000 children and family members have enrolled in IAN from all 50 states. Missouri is ranked second highest in the nation in terms of number enrolled, relative to number expected based on state population size and the target goal for the state. More specifically, during the first four months of IAN operation, approximately 190 children from Missouri enrolled along with many of their family members. IAN now provides the country’s largest pool of autism data and has been used already to supplement and enhance national research studies.

The Missouri state model derived from IAN was developed by researchers, families and state agency personnel during the course of several meetings in the past year. Contributors included Julia Kaufmann, Debra Fiasco, Gary Lyndaker from the Department of Mental Health, and Janet Farmer and Jim Laffey from the University of Missouri-Columbia. Several of these meetings were conducted with Law present either by phone or in person. In one case, the Associated Press and the Missourinet, a state wide radio news network, attended a news conference about this initiative. The news release resulted in over 100 national news reports about the partnership between Missouri and IAN.

Figure 1 illustrates data sharing and access to information about children with ASD enabled by the partnership between IAN and Missouri.

Figure 1

As noted in the figure, Missouri families enroll in the national registry online at the IAN website, saving the state substantial costs for database development, data entry and storage. Standard reports or a “state dashboard” then can be tailored to meet each state’s specific needs. An example of a state dashboard for Missouri is presented in Table 1. This table is taken from a peer-reviewed poster about the Missouri state autism registry presented by Farmer at the 6th International Meeting for Autism Research in Seattle, Wa. (IMFAR; March, 2007).

Efforts are also underway to identify how IAN data can be fully integrated into statewide autism information systems such as those in the Departments of Mental Health and Social Services. This creates a system for large-scale tracking of autism prevalence along with information about conditions and services in Missouri. Such interoperable structures promote a rich data source that will be unique to Missouri and that will provide important opportunities to advance autism research and service delivery.

Table 1

Aim 2. To further advance knowledge about causes and treatments by attracting potential participants to enroll in qualified research studies of ASD.

The key to the success of the IAN-MO registry project is adequate enrollment of Missouri children and families. Debra Fiasco and Farmer have taken several steps to inform families about IAN-MO. For example, Farmer presented information at the MU Autism Intervention Conference which was attended by 420 professionals and families from across the state. Other strategies for dissemination are listed below. Many of these have been initiated, but this will also require ongoing dissemination efforts. Additional efforts may need to be devised to encourage the enrollment of families who lack access to the Internet.

• Dissemination of IAN information to all DMH Regional Center Office Case Managers.
• Dissemination of IAN information to all DMH/MRDD clients and families
• Dissemination to state and local Parent Advisory Committees
• Demonstrations of IAN at Regional Workshops
• Information in ASD Rapid Response brochures, a pilot project in central Missouri
• Information sent to local school districts and libraries, advocacy and parent support groups.
• Department of Elementary and Secondary Education (DESE) monthly newsletter, Parents as Teachers program and the First Steps System Points of Entry
• Other state agency contacts such as Department of Health & Senior Services
• Information to statewide vendors that serve families through Autism Projects and other funding sources
• Office of Public Affairs-radio advertisements
• TV and local access channels

Aim 3. To assess variations across Missouri regions in the availability of specific interventions and services and to analyze responses to interventions for autism for the purpose of informing public policy.

Since the first step in the IAN-MO project has been data collection, there is still much to do in terms of analysis of participant responses. Of particular interest are parental reports of treatment use and treatment efficacy and regional patterns of access to care in Missouri. As soon as there is an adequate number of participants, these will be analyzed.

Aim 4. To provide the added benefit of supportive, relevant autism information for families, health care providers and educators that will attract users to the site.

Dr. Law and the IAN faculty at Kennedy Krieger Institute have created an excellent resource for families on what they call their “community” side of IAN. In addition to this resource for families, Debra Fiasco and Dr. Farmer have reviewed the Missouri Network of Care website that includes information regarding ASD (see below for website information) They are compiling ideas for how to make it more useful to families affected by ASD.

Next Steps
Missouri has successfully partnered with the IAN project at Kennedy Krieger Institute. Because of that program and support from the DMH/MRDD Real Choice Systems Change grant, new opportunities are available. Missouri researchers and policy analysts can learn more about the prevalence of ASD in Missouri, the responsiveness of the service delivery system, treatment outcomes, and other information to guide public policy. By developing a model for a cost-efficient state autism registry, Missouri has taken a leadership role in national ASD research and treatment initiatives. Most importantly, Missouri families now have a direct way to contribute to ASD research projects from the comfort of their own home. The potential for new discoveries that lead to improvements in the care of Missouri children with ASD is unprecedented. If you know a parent or legal guardian who might be interested in participating, just direct them to the IAN Web site below.

Web site Resources
IAN Web site: www.ianproject.org

Missouri Network of Care Web site: www.missouri.networkofcare.org

MU Thompson Center for Autism & Neurodevelopmental Disorders Web site: http://thompsoncenter.missouri.edu

Reference

Farmer, J.E., Laffey, J., Law, K., & Law, P. (2007, May). Building capacity for state autism registries through the Interactive Autism Network (IAN). Poster presentation at the 6th annual International Meeting for Autism Research, Seattle, WA.

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