Tuesday, March 11, 2008

Interactive Autism Network Research: Johns Hopkins and the Kennedy Krieger Institute

I came across this one at a scientific meeting I was attending.

The Kennedy Krieger Institute claims to be America's largest facility for the care and study of children with autism and other developmental disorders. Together with Autism Speaks they're sponsoring the IAN Project, a national project to study the natural history and characteristics of the the complex array of syndromes and disabilities now awkwardly lumped together as "autism":

Interactive Autism Network Research

...IAN Research allows parents of children diagnosed with an Autism Spectrum Disorder (ASD) to participate in research over the Internet. Parents provide information about their child's diagnosis, behavior, family, environment, and services received. Parents may also report on their child's progress over time.

Who can participate in IAN Research?

To register and answer research questions in IAN Research, you must live in the United States and be a biological or adoptive parent of a child under the age of 18 who is diagnosed professionally with one of the following disorders:

  • Autism Spectrum Disorder (ASD)
  • Autism
  • Asperger Syndrome
  • Autistic Disorder
  • Pervasive Developmental Disorder (PDD)
  • Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
  • Childhood Disintegrative Disorder (CDD)

The child should not have a diagnosis of Rett Syndrome.

What are the benefits of joining?

You will be able to participate in important research on ASDs. IAN will provide tools that help you monitor your child's progress over time and explore how your child is similar to (or different than) other children affected by this disorder.

I suspect there's some work involved and that the benefits will not accrue to this generation of autistic children, but we will consider entering the study.

The IAN Project has a related community component to recruit study participants and connect interested persons to their research developments (though they're not going to reveal anything interesting prior to publication - that's just the way academia works). It includes discussion groups and articles like this one:

What are the behaviors and ways of taking in the outside world that distinguish a person with an ASD from his or her “typical” peers? Although these will vary according to the severity of a person’s autism and where they are in the lifespan, there are core issues that impact most people with an Autism Spectrum Disorder. In this section we explore each of these overlapping topics...

The Community component is very much secondary to the research component. The articles all end on the same note "we don't know much, please join our study". A bit disappointing but also true -- we really don't know much about cognitive disorders.

The Discussion Groups are focused on the IAN research project. It will be tough to keep them on topic -- they'd need heavy moderation to survive. I'll take a look at them later and comment on how well that's working out.

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