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IAN. Online Registry AND longitudinal observational study Provides recruitment service Provides data resource Educates families about research (86% naïve) Explains value of research Provides immediate feedback to families Distributes research findings to public

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  1. IAN • Online Registry AND longitudinal observational study • Provides recruitment service • Provides data resource • Educates families about research (86% naïve) • Explains value of research • Provides immediate feedback to families • Distributes research findings to public • 16,000 consented individuals in <3 months • 6,000 children with ASD

  2. IAN continued • IAN Depends on • IAN Team • Research professionals • Online community experts • Marketing/PR professionals • Researchers input • Stable relationship with funding agency • Partnership with a myriad of advocacy agencies • Trust with families • Robust informatic platforms • Strong institutional commitment • Good relationship with the IRB


  4. 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

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

  6. 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

  7. IAN Growth

  8. 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%

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

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

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

  12. 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

  13. 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

  14. Representation by State

  15. Map

  16. The IAN Community:A research-focused online library and meeting place welcoming families, researchers, and all those impacted by an Autism Spectrum Disorder. (All inclusive – for individuals with ASDs, families, researchers, physicians, educators, therapists, friends, etc.) IAN Community

  17. IAN Community Home Page: www.IANcommunity.org IAN Community

  18. GOAL #1: To engage parentsof children with ASDs in order to… Increase and maintain participation in IAN Research Solicit parent input on research topics of most urgent interest Generate feedback from parents on IAN Research and autism research in general IAN Community

  19. GOAL #2: To provide researchers with… • A way to communicate the value of their work and findings to families and the larger community • Research participants who are becoming educated about the research process • An additional way to learn about families’ needs, experiences, and priorities • Instructions for How to Apply to Use the IAN Data or Research Registry. (See “For Researchers” on www.IANcommunity.org) IAN Community

  20. GOAL #3: To help all visitors… Understand the value of research Recognize gaps in our knowledge Become informed consumers of research Influence the future direction of research Keep up with the latest findings, news, and events IAN Community

  21. Researchers Reaching Families • Articles on diverse topics by leaders in the field, such as: • Simon Baron-Cohen – “Very Late Diagnosis of Asperger’s Syndrome” • Catherine Lord – “Frequently Asked Questions About Autism Diagnoses” • Beth Malow – “A Good Night’s Sleep: Why is it So Hard to Get?” IAN will also help researchers using IAN Data or Subject Recruitment to “translate” their findings for a lay audience, making parents and others aware of their work and its relevance to their own lives. • Participation in the Discussion Forums IAN Community

  22. Sharing IAN Research Findings – A Two Way Street IAN Community

  23. Empowering Families and Others as Participants IAN Discussion Forums such as: • “Why I Participated in IAN Research” • “Your Input on Research Topics” • “IAN Research Findings” IAN Community

  24. The IAN Exchange is an online Community of Practice for Autism Researchers that will: • Enable the exchange/convergence of community knowledge and ideas • Promote collaboration in the autism research community IAN Exchange

  25. But what’s a Community of Practice (CoP)? A network made up of individuals who share: • Set of concerns • Common mandate • Sense of purpose IAN Exchange

  26. But more than just a community, CoPs, like Guilds: • Span borders of organizational and geographic boundaries intentionally • Complement existing structures • Promote collaboration, information exchange, and the development of best practices • Self-governed and managed IAN Exchange

  27. A Very Brief History of CoPs • The first known ‘CoPs’ (Guilds) were developed in India 2000 – 500 B.C. • Term coined in 1991 • The first known (by me) ONLINE CoP was developed in Baltimore in 1990 IAN Exchange

  28. Known as the Genome Database Project… • It organized and amassed information about the subject at hand • It was maintained by the researchers themselves – they were the ‘curators’ of the information IAN Exchange

  29. And…it organized the peopleand brought them together in new collaborations in a brand new way IAN Exchange

  30. In the 21st Century, Online CoPs exist in most professions The Best: Organize people, organizations, and groups. IAN Exchange

  31. The Best: Provide tools that help professionals get their work done better IAN Exchange

  32. The Best: Allow the professionals do it by themselves (with a little help from the staff)! IAN Exchange

  33. The Best: Provide mechanisms for groups and individuals to manage their knowledge assets IAN Exchange

  34. The Best: Create unprecedented partnerships IAN Exchange

  35. The Best: Foster informal learning and exchange of experiences. IAN Exchange

  36. Most importantly: Become an essential part of the participants’ lives. IAN Exchange

  37. Most importantly: Become an essential part of the participants’ lives. IAN Exchange

  38. But why do autism researchers need this? IAN Exchange

  39. Because autism researchers come from…. IAN Exchange

  40. A variety of disciplines… Psychiatry Genetics Neurobiology Education Anthropology Physical Therapy Psychology Pediatrics Occupational Therapy Epidemiology Public Health Psychopharmacology Sociology Speech and Language Etc. IAN Exchange

  41. A variety of institutions… Universities Clinics Schools Hospitals Non-profits/NGOs Governmental agencies from local to national Etc. IAN Exchange

  42. All over the world… IAN Exchange

  43. We publish in scores of journals… American Journal of Medical Genetics Current Opinion in Psychiatry Journal of Neuroscience Research Journal of Abnormal Child Psychology Journal of Autism and Developmental Disorders Archives of General Psychiatry Clinical Endocrinology CNS Spectrums Pediatrics Pediatric Clinics of North America Biological Psychiatry American Journal of Mental Retardation Pediatric Nursing Journal of Child Language Epilepsia Etc. IAN Exchange

  44. But much of what we learn comes from peers and mentors… IAN Exchange

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