IAN Project
• IAN Research --- Kiely Law, MD, MPH– Research Database collecting parent-provided information – Recruitment Registry matching families and research projects
• IAN Community --- Connie Anderson, PhD– Information-rich library and online meeting place focused on ASD
research
• IAN Exchange --- Cheryl Cohen– Online collaborative environment supporting the exchange of
knowledge and ideas
Internet Mediated Research (IMR)
• Rapidly growing field (hundreds of articles on PubMed)
• Scientific obstacles being worked out
• Previously thought of a research method that excluded, now thought as a way to include (engender equity)
– More families live closer to a computer than a research hospital
Trends in Internet Use
Pew Internet & American Life Project Surveys, March 2000-April 2006.
IAN Conceived
IAN Launched
Current Inventory of Questionnaires• Child with an ASD
– Basic history form– SCQ lifetime (>age 2 years)– Treatment list builder (start form)– Treatment follow-up (continuation form, stop form)
• Sibling– Basic history form– SCQ lifetime (>age 2 years)
• Mother– Basic history form
• Father– Basic history form
All have registration forms– Demographics and relationships
IAN Growth0
5000
1000
015
000
2000
0In
divi
dual
s
0 2 4 6 8Weeks
updated 14 Jun 2007
Consented IAN Research Participants
Children with an Autism Spectrum Disorder (ASD)
• NUMBER: 5,773
• AGE: Average 8.0 years (SD 3.9)Min 0.8 years, Max 17.99 years
• GENDER:
• ETHNICITYHispanic: 8.5 %Non-hispanic: 91.5 %
• RACEWhite 86.5%Multi 4.2%Other 4.0%Black/AA 3.3%Asian 1.3%AI/AN 0.4%NH/PI 0.1%Unknown 0.1%
17%
83%
Girl Boyupdated 14 Jun 2007
Gender of Children with ASD
Children with an Autism Spectrum Disorder (ASD)
• DIAGNOSIS:
45%
14%
29%
7%5%
Autism Asperger'sPDD-NOS PDDASD
updated 14 Jun 2007
Diagnoses of affected children
Siblings
• NUMBER: 4,039
• AGE: Average 8.0 years (SD 4.7)
Min 0.04 years, Max 17.99 years
• GENDER:
52%48%
Girl Boyupdated 14 Jun 2007
Gender of Children with ASD Gender of Siblings
Social Communication Questionnaire0
200
400
600
800
0 10 20 30 40 0 10 20 30 40
Not ASD ASD
Fre
que
ncy
SCQ ScoreGraphs by ASDcurrent
Specificity: 94.5% Sensitivity: 83.4%
Cut-off: 15 Cut-off: 15
Parents
• NUMBER: 5,715
• AGE: Average 38.7 years (SD 6.7)
Min 19.4 years, Max 74.0 years
• GENDER:
• EDUCATIONAL LEVEL
Mom Dad
Some HS <2% <2%
HS Graduate 10% 9%
Some college 39% 28%
BA/BS 30% 30%
Master’s degree 14% 20%
Doctoral/professional 5% 11%
87%
13%
Mother Fatherupdated 14 Jun 2007
Gender of Participating Parents
Special Groups
• Twin sets– 47 sets MZ twins (concordance 83%)– 160 sets DZ twins (concordance 25%)
• Triplet sets– 13 sets
• Multiplex families (Maternal clans)– 2 affected children: 465– 3 affected children: 36– 4 or more affected: 8
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