Rehabilitation Dataset Directory: Dataset Profile

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. 

Note: The IAN research registry closed on June 30, 2019 and are no longer enrolling participants or collecting new data. The de-identified data set is available to researchers on a limited basis (see data access below).

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

Kennedy Krieger Institute

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

Cognitive disability

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

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:

• 54,000 participants
• 561 independent adults with ASD

Individual

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. 

NA

Children/Youth (with autism), Adults with autism

Online surveys

2006 - present

Ongoing

• 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)

• 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

https://iancommunity.org/data_services

https://iancommunity.org/data_services

Note: The IAN research registry closed on June 30, 2019 and are no longer enrolling participants or collecting new data. The de-identified data set is available to researchers on a limited basis. To inquire further, please contact IAN’s principal investigator, Dr. Paul Lipkin at lipkin@kennedykrieger.org.

Data Use agreement*, No cost

*IRB approval required for data application

IAN Research Reports:

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

IAN "StateStats":

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

IAN Research Publications:

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

IAN Research Reports:

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

IAN Research Questionnaires:

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

• National Children’s Study Archive