IAN Project IAN Research Kiely Law MD MPH

Internet Mediated Research (IMR) • Rapidly growing field (hundreds of articles on Pub. Med)

Trends in Internet Use IAN Conceived IAN Launched Pew Internet & American Life Project

Current Inventory of Questionnaires • Child with an ASD – – • Basic history

Children with an Autism Spectrum Disorder (ASD) • • NUMBER: 5, 773 AGE: Average

Children with an Autism Spectrum Disorder (ASD) • DIAGNOSIS:

Siblings • • NUMBER: 4, 039 AGE: Average 8. 0 years (SD 4. 7)

Social Communication Questionnaire Specificity: 94. 5% Cut-off: 15 Sensitivity: 83. 4% Cut-off: 15

Parents • • NUMBER: 5, 715 AGE: Average 38. 7 years (SD 6. 7)

Special Groups • Twin sets – 47 sets MZ twins (concordance 83%) – 160

Action Items • Use IAN research Data • Recruit study participants • Help create

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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, Ph. D – 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 Pub. Med) • 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 IAN Conceived IAN Launched Pew Internet & American Life Project Surveys, March 2000 -April 2006.

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 v All have registration forms – Demographics and relationships

IAN Growth

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 White Multi Other Black/AA Asian AI/AN NH/PI Unknown 86. 5% 4. 2% 4. 0% 3. 3% 1. 3% 0. 4% 0. 1%

Children with an Autism Spectrum Disorder (ASD) • DIAGNOSIS:

Siblings • • NUMBER: 4, 039 AGE: Average 8. 0 years (SD 4. 7) Min 0. 04 years, Max 17. 99 years • GENDER: Gender of Siblings

Social Communication Questionnaire Specificity: 94. 5% Cut-off: 15 Sensitivity: 83. 4% Cut-off: 15

Parents • • NUMBER: 5, 715 AGE: Average 38. 7 years (SD 6. 7) • EDUCATIONAL LEVEL Min 19. 4 years, Max 74. 0 years • GENDER: Some HS HS Graduate Some college BA/BS Master’s degree Doctoral/professional Mom <2% 10% 39% 30% 14% 5% Dad <2% 9% 28% 30% 20% 11%

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