Research Program

The full-time program of research sponsored by the KID Foundation, a Colorado public charity (501-c-3), is implemented at the University of Colorado Health Sciences Center (Medical School) (Dr. Lucy Jane Miller, PI). The research laboratory and intervention services are implemented at the STAR Center (Sensory Integration Treatment And Research Center) at The Children’s Hospital of Denver.

This full-time research program focuses on the following questions:

1. What are the underlying neurologic, physiologic and biochemical mechanisms implicated in DSI?
2. What is the effectiveness of Occupational Therapy in ameliorating the underlying disorders as well as in changing participation, self regulation and self-esteem in children with DSI?
3. Is DSI a valid, separate syndrome or instead correlated symptoms in various conditions such as ADHD, Anxiety Disorder, Autistic Spectrum Disorder, and Fragile X Syndrome?
4. What is the prevalence of DSI in populations with typical development and in populations with various developmental disorders?

In addition to an active research program, the KID Foundation has three other priorities. First, it advocates for recognition of DSI in existing diagnostic taxonomies such as the Diagnostic and Statistical Manual (DSM) and the DC 0-to-3 classification scheme. Second, it educates parents, physicians, therapists and teachers through a website, www.SInetwork.org, and through nationwide seminars. Third, it supports parents through a Parent to Parent Support network, DSI Parent Connections. Fourth it is currently designing a resource directory to provide national information about assessment and intervention resources for parents..

Our research is published in medical journals whenever possible. We have developed a psychophysiologic laboratory in the form of a pretend space ship. We have evaluated sympathetic and parasympathetic reactions after sensory stimuli in children with fragile X syndrome, attention deficit disorders, idiopathic sensory processing difficulties and autistic spectrum disorders. We have documented a range of atypical physiologic reactions and behavioral responses to incoming sensory information (Miller et al, 1999; McIntosh, et al., 1999; Mangeot et al 2001; Miller, et al 2001; Hagerman et al 2002; Schaaf, et al 2003). We have initial evidence discriminating DSI and ADHD (Ognibene et al, submitted).

Another major research emphasis is our intervention trials to determine the effectiveness of intervention. We have completed a pilot treatment trial and have implemented a Randomized Clinical Trial comparing Occupational Therapy to a “sham” treatment, called the “Activity Protocol.” We have received an NIH grant to develop a measure of fidelity to treatment so that a future multi-site treatment trial can be conducted. This grant also establishes three additional space ship laboratories to measure physiologic functions at: University of Southern California, Boston University and Thomas Jefferson University.
The KID Foundation is actively advocating the expansion of DSI research into existing well-funded research programs. In 2002, we hosted a three day Sensory Research Planning Retreat attended by 14 NIH-funded researchers from esteemed institutions such as Harvard Medical School, Duke University, University of WI. at Madison, UC San Francisco, Temple University and others. Eight researchers left the retreat with funded pilot projects. A second retreat is scheduled for 2004 to report results and plan future research.

With appropriate support, the programs of the KID Foundation could grow exponentially providing needed empirical support to 1) validate the existence of a reliably discriminated syndrome (DSI) and 2) document the effectiveness of intervention. This research has major implications for parents seeking insurance coverage for their children with DSI and for therapists who need empirical data regarding the effectiveness of their interventions.

References:

Hagerman, R. J., Miller, L. J., McGrath-Clarke, J., Riley, K., Goldson, E., Harris, S.W., Simon, J., Church, K., Bonnell, J., Ognibene, T.C., & McIntosh, D.N. (2002). Influence of stimulants on electrodermal studies in fragile X syndrome. Microscopy Research and Technique, 57, 168-173.
Mangeot, S.D., Miller, L.J., McIntosh, D.N., McGrath-Clarke, J., Hagerman, R.J., & Goldson, E. (2001). Sensory modulation dysfunction in children with attention deficit hyperactivity disorder. Development Medicine and Child Neurology, 43, 399-406.

McIntosh, D.N., Miller, L.J., Shyu, V., Hagerman, R. (1999). Sensory-modulation disruption, electrodermal responses, and functional behaviors. Developmental Medicine and Child Neurology, 41, 608-615.

Miller, L.J., McIntosh, D.N., McGrath, J., Shyu, V., Lampe, M., Taylor, A.K., Tassone, F., Neitzel, K., Stackhouse, T., & Hagerman, R. (1999). Electrodermal responses to sensory stimuli in individuals with fragile X syndrome: A preliminary report. American Journal of Medical Genetics, 83(4), 268-279.

Miller, L.J., Reisman, J.E., McIntosh, D.N., & Simon, J. (2001). An ecological model of sensory modulation: Performance of children with Fragile X Syndrome, Autism, Attention-Deficit/Hyperactivity Disorder, and Sensory Modulation Dysfunction. In S.S. Roley, E.I. Blanche, & R.C. Schaaf (Eds.), Understanding the nature of sensory integration with diverse populations (p. 57-88). San Antonio, TX: Therapy Skill Builders.

Ognibene, T.C., McIntosh, D.N., Miller, L.J., & Raad, J.M. (2003). Sensory habituation and response inhibition in children with attention-deficit/hyperactivity disorder and sensory modulation dysfunction. Manuscript submitted for publication.
Schaaf, R. C., Miller, L. J., Sewell, D., & O'Keefe, S. (July, 2003 in press). Children with disturbances in sensory processing: A pilot study examining the role of the parasympathetic nervous system.

Return to NEWS