Jan 26, 2016
The IAN Community:
A research-focused online library and meeting place welcoming families, researchers, and all those impacted by an Autism Spectrum Disorder.
(All inclusive – for individuals with ASDs, families,
researchers, physicians, educators, therapists,
friends, etc.)
IAN Community
IAN Community Home Page: www.IANcommunity.org
IAN Community
GOAL #1: To engage parents of children with ASDs in order to…
• Increase and maintain participation in IAN Research
• Solicit parent input on research topics of most urgent interest
• Generate feedback from parents on IAN Research and autism research in general
IAN Community
GOAL #2: To provide researchers with…
• A way to communicate the value of their work and findings to families and the larger community
• Research participants who are becoming educated about the research process
• An additional way to learn about families’ needs, experiences, and priorities
• Instructions for How to Apply to Use the IAN Data or Research Registry. (See “For Researchers” on www.IANcommunity.org)
IAN Community
GOAL #3: To help all visitors…
• Understand the value of research• Recognize gaps in our knowledge• Become informed consumers of research• Influence the future direction of research• Keep up with the latest findings, news, and
events
IAN Community
Resources on the IAN Community Site:
• Basic information on ASDs: diagnoses, challenging behaviors, treatments(Over 100 articles and 280 glossary items)
• Articles on diverse research topics by leaders in the field
• Reports on IAN Research findings –information flow back to participants and community
• Discussions focused on research topics –a place for parents and others to make their voices heard
IAN Community
Basic Information on ASDs
IAN Community
Researchers Reaching Families
• Articles on diverse topics by leaders in the field, such as:
• Simon Baron-Cohen – “Very Late Diagnosis of Asperger’s Syndrome”
• Catherine Lord – “Frequently Asked Questions About Autism Diagnoses”
• Beth Malow – “A Good Night’s Sleep: Why is it So Hard to Get?”
IAN will also help researchers using IAN Data or Subject Recruitment to “translate” their findings for a lay audience, making parents and others aware
of their work and its relevance to their own lives.
• Participation in the Discussion Forums
IAN Community
Sharing IAN Research Findings – A Two Way Street
IAN Community
Empowering Families and Others as Participants
IAN Discussion Forums such as:
• “Why I Participated in IAN Research”• “Your Input on Research Topics”• “IAN Research Findings”
IAN Community
Discussion Forum Example
IAN Community
Parents’ Voices
Parents ask Researchers to Find Out More About:
• Meltdowns (i.e. Mood Disorders, Tantrums, Rages) in ASDs• Milk Products, Allergies/Sensitivities, and GFCF Diets• Eczema, Psoriasis, Asthma, Allergies, Autoimmune Issues and
Autism – Connections?• Pregnancy & Birth – any connection to ASDs?
Amnio, Ultrasound, Induced Labor, SSRIs during pregnancy• “High-Functioning” Kids – Earlier Diagnosis and Intervention
Most Popular Forum Ever: • Mothers and Depression – sparked by IAN data
showing that “46% of mothers in IAN Research have been diagnosed with or treated for Depression.”
IAN Community
Discovering www.IANcommunity.org
Since our launch on April 2, 2007:
– 4,900 registered users (and registration is not mandatory!)
– 1.5 million pages viewed
– Average of 800+ visitors per day
– Average visitor stays on the site 11 minutes
– Average visitor views over 20 pages of content
They come, they stay, they read
IAN Community
Action Items for Researchers
To support the IAN Community, we hope you will:
• Write an article in your area of expertiseSee “Guidelines for IAN Authors” in your kit folder!
• Read and participate in the Discussion Forums – they are monitored and moderated.
• Inform affected families who visit your clinic or lab about the IAN Community
• Tell other researchers about the IAN Community
COMMUNITY: Making Connections
• Between Content Items…
Linking articles to research questions to findings to discussions
• Between People…
Linking individuals with ASDs, families, researchers, educators, therapists, physicians, and friends
IAN Community