2. 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

4. IAN RESEARCH

5. 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

6. Trends in Internet Use Pew Internet & American Life Project Surveys, March 2000-April 2006. IAN Conceived IAN Launched

7. 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

8. IAN Growth

9. 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: ETHNICITY Hispanic: 8.5 % Non-hispanic: 91.5 % RACE White86.5% Multi 4.2% Other 4.0% Black/AA 3.3% Asian 1.3% AI/AN 0.4% NH/PI 0.1% Unknown 0.1%

10. Children with an Autism Spectrum Disorder (ASD) DIAGNOSIS :

11. Siblings NUMBER : 4,039 AGE: Average 8.0 years (SD 4.7) Min 0.04 years, Max 17.99 years GENDER: Gender of Siblings

12. Social Communication Questionnaire Specificity: 94.5%Sensitivity: 83.4% Cut-off: 15

13. 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%

14. 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

15. Representation by State

16. Map

17. Action Items Use IAN research Data Recruit study participants Help create new questionnaires