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Rehabilitation Dataset Directory: Dataset Profile

Dataset: Interactive Autism Network (IAN)

Basic Information
Dataset Full Name Interactive Autism Network
Dataset Acronym IAN
Summary

The Interactive Autism Network (IAN) data is based on online surveys collected from a network of children and adults with autism spectrum disorder (ASD) and their families accessed through IAN web-based portals. Surveys are completed directly by either parents/caregivers of individuals with Autism, or adults with Autism. IAN participants are recruited primarily through social media, ASD related events, and networking between families of persons with ASD. Participants have the opportunity to complete baseline questionnaires, standardized instruments as well as one-time surveys. 

The IAN surveys collect a variety of data including items related to diagnosis, behavior, family, environment, and services received as well as special one-time topical surveys. Participating parents report on their child’s progress over time and adults with ASD share information about their experiences and needs. This approach provides researchers with a number of participant and participant proxy reported outcomes. 

IAN data serves as a research database as well as a research registry to help connect people with autism and their families to clinical research studies.  Based on the information that families and researchers provide, IAN works to match families to research studies recruiting around the country. 

Key Terms

Child development, Adult autism, Treatment, Therapy, IQ, Heath care provider, Employment, Education, School services, Special education, Special needs, Socialization

Study Design Longitudinal
Data Type(s) Survey
Sponsoring Agency/Entity

Kennedy Krieger Institute

Health Conditions/Disability Measures
Health Condition(s)

Autism Spectrum Disorder (ASD), Epilepsy or seizure disorder,

Asperger Syndrome, Childhood Disintegrative Disorder (CDD), Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Pervasive Developmental Disorder (PDD), Social Communication Disorder (SCD)


Conditions asked about in Independent Adult Survey: 

ADD/ADHD, Allergies, Anxiety disorders, Arthritis, Bipolar disorder, Cancer, Cardiovascular conditions, Depression, Diabetes, Obsessive Compulsive Disorder (OCD), Schizophrenia,  Thyroid disease

Disability Measures

Cognitive disability


PROMIS Global Health, Social communication questionnaire, Social responsiveness scale, Verbal ability 

Measures/Outcomes of Interest
Topics

Bullying, Victimization, Discrimination, Harassment, Speech/language skill loss, Motor ability skill  loss, Diagnosis history, Developmental history, Social Responsiveness Scale (SRS), Social Communication Questionnaire (SCQ)

Behavior and developmental history, Global Unique Identifier Elements, Developmental milestones for speech and mobility, Perceptions and past experiences in ASD research studies and with ASD related treatments

Sample
Sample Population

Individuals diagnosed with autism spectrum disorder 

Informants include parents/caregivers of child/youth with autism as well as adults with autism (or their caregivers). 

Sample Size/Notes

As of 9/1/2018:

  • 54,000 participants
  • 561 independent adults with ASD
Unit of Observation

Individual

Continent(s)

North America (primarily)

Countries

United States (primarily, 95% in US)

Geographic Coverage

95% of participants are within the United States.

Remaining participants are from approximately 100 other countries. 

Geographic specificity

NA

Special Population(s)

Children/Youth (with autism), Adults with autism

Data Collection
Data Collection Mode

Online surveys

Years Collected

2006 - present

Data Collection Frequency

Ongoing

Strengths and Limitations
Strengths
  • Large sample size
  • Some limited longitudinal data available
  • Wealth of data and measurements
  • Includes patient, family and caregiver oriented surveys and measures
  • Includes sibling data for comparison
  • Baseline surveys as well as occasional special topical surveys (sub-sample)
Limitations
  • Self selected sample may not be representative 
  • Self reported data
  • Data can be "patchy" due to incomplete surveys and questionnaire items
  • Some surveys have relatively small samples
  • Limited clinical data/correlation
  • Participants must be English literate
Data Details
Primary Website

https://iancommunity.org/data_services

Data Access

https://iancommunity.org/data_services


IAN Data Access Application:

https://www.ianresearch.org/DataAccessApplication.aspx

Data Access Requirements

Data Use agreement*, No cost

*IRB approval required for data application

Summary Tables/reports

Interactive IAN Survey Results Viewer- data collected from 2/2013 onward

(allows you to narrow the results by such factors as age, sex, and ASD diagnosis):

https://dashboards.ianservices.org/Dashboards/Codebook/Selection/IANCommunity


Researcher Codebooks (data collected prior to 2/2013):

https://www.ianresearch.org/Codebooks/ResearcherCodebook.aspx


IAN "StateStats":

https://iancommunity.org/cs/for_researchers/ian_statestats

Data Components
Selected papers
Other Papers

IAN Research Publications:

https://iancommunity.org/cs/ian_research_publications/overview

IAN Research Reports:

https://iancommunity.org/cs/ian_research_reports/overview

Technical

IAN Research Questionnaires:

https://iancommunity.org/cs/ian_research_questions/ian_research_questions


Researcher Codebooks (1/28/2013)  

https://www.ianresearch.org/Codebooks/ResearcherCodebook.aspx


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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

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Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.

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