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IAN Project

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

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IAN Project

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  1. 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

  2. IAN RESEARCH

  3. 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

  4. Trends in Internet Use IANLaunched IANConceived Pew Internet & American Life Project Surveys, March 2000-April 2006.

  5. 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

  6. IAN Growth

  7. 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 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%

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

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

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

  11. NUMBER: 5,715 AGE: Average 38.7 years (SD 6.7) Min 19.4 years, Max 74.0 years GENDER: EDUCATIONAL LEVEL MomDad 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% Parents

  12. 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

  13. Representation by State

  14. Map

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

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