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Contributors: 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 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
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 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 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.
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
Web site Resources 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. View this issue in Adobe Acrobat Format (1050 KB)
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This file last modified Friday August 10, 2007, 12:22:50
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