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

IAN RESEARCH

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

Representation by State

Map

Action Items

• Use IAN research Data• Recruit study participants• Help create new questionnaires