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Taking Part in IAN Research

Date Last Revised: 
February 4, 2014
Date Published: 
April 2, 2007

The Interactive Autism Network (IAN) Project provides an opportunity for individuals with autism spectrum disorders (ASDs) and their families to actively participate in autism research from anywhere they can access the internet.

Who is eligible to participate in IAN Research?

  • All children (under the age of 18) who have been diagnosed with an ASD by a professional

    The child must be enrolled in IAN Research by a biological or an adoptive parent who is legally authorized to provide consent. Once a research profile is created, other eligible family members may participate, including biological/adoptive parents and any full or half-siblings (under the age of 18).
     
  • All adults who have been diagnosed with an ASD by a professional

    Individuals with an ASD who are 18 or older and are able to provide consent for themselves may join and create their own research profile. They may then add additional eligible family members, including any biological/adoptive children (under the age of 18) and any other parents of these children.

    Individuals with an ASD who are 18 or older and are NOT able to provide consent must be enrolled in IAN Research by a guardian (Legally Authorized Representative). Once a research profile is created, the guardian may add other eligible family members. If the guardian is also the adult's parent, they may add the adult with ASD's other parent, as well as their other children (the adult's siblings). If a LAR is not a parent, they do not need to add other family members. One exception: if they are a a biological relative of the adult with ASD (sibling, aunt, uncle, grandparent, etc.), and have their own child with an ASD, they should add their child with ASD, their child's siblings, and their child's other parent. The point is to create a family tree relevant to ASD research.

Which ASD diagnoses are included in IAN Research?

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

How does it work?

Via secure online questionnaires, and without ever leaving the comfort of home, parents of children with ASDs can provide crucial information about their child's diagnosis, behavior, environment, and services received.

Independent adults with ASD, and guardians of dependent adults with ASD, can share valuable information about the experiences, strengths,and needs of adults on the autism spectrum. (There is not much information about how adults with ASD in the United States and around the world are doing. We hope to change that.)

Our online surveys are easy to fill out, and you can complete them as your schedule allows, stopping and starting as you have time. The IAN Research system will save your survey and bring you back to the place you stopped when you log in again.

There is little data about children with ASDs available to a wide range of researchers, and even less about adults with ASDs. Through IAN, researchers from throughout the world will be able to work with the information you provide to learn about the effect and interaction of factors such as genetics, environment, and treatment, as well as the current situation, well-being, and needs of those affected by ASDs.

At the same time, IAN Research will also serve as a research registry, helping individuals with ASDs and their families to stay informed about other autism research projects for which they qualify. Each year, many important ASD studies are significantly delayed or not completed because researchers cannot find enough qualified participants. As a result, valuable opportunities to learn about ASDs are lost. IAN hopes to contribute to the solution of this problem with the help of our participants.

Our overall goal is to accelerate and expand autism research.

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