|Dataset Full Name||Interactive Autism Network|
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.
Child development, Adult autism, Treatment, Therapy, IQ, Heath care provider, Employment, Education, School services, Special education, Special needs, Socialization
Kennedy Krieger Institute
|Health Conditions/Disability Measures|
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
PROMIS Global Health, Social communication questionnaire, Social responsiveness scale, Verbal ability
|Measures/Outcomes of Interest|
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
Individuals diagnosed with autism spectrum disorder
Informants include parents/caregivers of child/youth with autism as well as adults with autism (or their caregivers).
As of 9/1/2018:
|Unit of Observation||
North America (primarily)
United States (primarily, 95% in US)
95% of participants are within the United States.
Remaining participants are from approximately 100 other countries.
Children/Youth (with autism), Adults with autism
|Data Collection Mode||
2006 - present
|Data Collection Frequency||
|Strengths and Limitations|
IAN Data Access Application:
|Data Access Requirements||
Data Use agreement*, No cost
*IRB approval required for data application
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):
Researcher Codebooks (data collected prior to 2/2013):
|Data Components||Selected papers|
IAN Research Publications:
IAN Research Reports:
IAN Research Questionnaires:
Have a question about disability data or datasets?
E-mail your question to our researchers at email@example.com
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).
Other CLDR supported resources and collaborative opportunities:
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.
For questions or comments please contact firstname.lastname@example.org