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					                                                              KONO
                                                                                                           Domain Specific
IAN Research                              Fragile X                              SWS                    Research Environment



   Common Informatics Platform, Sharing of Subjects and Content Where Appropriate



    Autism Speaks
         ASA                               Fragile X
     Pathfinders                                                         SW Foundation                                   ?
                                          Foundations
         Etc...




     Provide Funding, Promotion, Accountability, Advocate to NIH for resources and Share best practices (Online CoP)


      IAN Staff
 Steering Committee                   Registry Environment                Registry Environment                  Registry Environment
  Scientific Advisors                        Team B                              Team C                                Team D
   Parent Advisors


     Harmonization of Content, Shared Software Development, Shared Best Practices (Online CoP)




  Network Center A     Network Center B    Network Center C   Network Center D   Network Center E   Network Center F   Network Center G
                     Community of Professionals Supported by an Online Community of Practice


       RIS                  RIS                 RIS                RIS                RIS                RIS                 RIS




       EHR                  EHR                 EHR                EHR                EHR                EHR                 EHR




RIS=Research Information System=Inst. Registry+Repurpose EHR data + data from specific studies
     Institution Specific Connection to Online Research Environment for those subjects who consent
HER = Electronic Health Record, source of research data for those consented
Community of Practice (CoP) = Any network of professionals who actively share a knowledge base
Online CoP = A CoP supported the the power of online networking tools and knowledge management
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
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
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                                                      IAN Launched




      IAN Conceived   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

 All have registration forms
     – Demographics and relationships
   IAN Growth
                            Consented IAN Research Participants
20000
15000
10000
    5000

           0




               0               2      4         6        8
                                          Weeks
               updated 14 Jun 2007
Children with an Autism Spectrum Disorder (ASD)
  •        NUMBER: 5,773                      • ETHNICITY
  •        AGE: Average 8.0 years (SD 3.9)      Hispanic: 8.5 %
           Min 0.8 years, Max 17.99 years       Non-hispanic: 91.5 %

  •        GENDER:                            • RACE
                                                White      86.5%
                Gender of Children with ASD
                                                Multi       4.2%
                                                Other       4.0%
                                 17%            Black/AA    3.3%
                                                Asian       1.3%
                                                AI/AN       0.4%
                                                NH/PI       0.1%
                        83%                     Unknown     0.1%

                          Girl     Boy
updated 14 Jun 2007
Children with an Autism Spectrum Disorder (ASD)
•   DIAGNOSIS:
                      Diagnoses of affected children

                                 5%
                                7%

                                         45%
                             29%

                                   14%

                             Autism       Asperger's
                             PDD-NOS      PDD
                             ASD
       updated 14 Jun 2007
Siblings
•   NUMBER: 4,039
•   AGE: Average 8.0 years (SD 4.7)
    Min 0.04 years, Max 17.99 years


•   GENDER:
                      Gender of Children with ASD
                          Gender of Siblings




                            48%          52%




                                  Girl   Boy
      updated 14 Jun 2007
                  Social Communication Questionnaire
                                         Not ASD                             ASD
            800




                                     Specificity: 94.5%             Sensitivity: 83.4%
            600
Frequency




            400
            200
                   0




                       0        10         20      30      40   0     10      20     30   40
                               Cut-off: 15              SCQ Score     Cut-off: 15
                  Graphs by ASDcurrent
Parents
•        NUMBER: 5,715                             •   EDUCATIONAL LEVEL
•        AGE: Average 38.7 years (SD 6.7)
         Min 19.4 years, Max 74.0 years                                    Mom    Dad
                                                   Some HS                 <2%    <2%
•        GENDER:                                   HS Graduate             10%     9%
                                                   Some college             39%   28%
                 Gender of Participating Parents
                                                   BA/BS                   30%    30%
                                                   Master‟s degree          14%   20%
                           13%
                                                   Doctoral/professional     5%   11%



                                   87%

                          Mother         Father
    updated 14 Jun 2007
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
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
IAN Community Home Page: www.IANcommunity.org




                                     IAN Community
GOAL #1: To engage parents of 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
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
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
    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
Sharing IAN Research Findings – A Two Way Street




                                     IAN Community
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
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
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
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
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
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
And…it organized the people
   and brought them together in new
   collaborations in a brand new way




                                       IAN Exchange
In the 21st Century, Online CoPs exist in most professions



           The Best:

Organize people, organizations, and
groups.




                                              IAN Exchange
The Best:


Provide tools that help professionals
     get their work done better




                                        IAN Exchange
The Best:


Allow the professionals do it by
themselves (with a little help from
the staff)!




                                      IAN Exchange
The Best:


Provide mechanisms for groups and
    individuals to manage their
         knowledge assets




                                    IAN Exchange
The Best:


Create unprecedented
    partnerships




                       IAN Exchange
The Best:


Foster informal learning
   and exchange of
     experiences.




                           IAN Exchange
Most importantly:


 Become an essential
part of the participants‟
          lives.




                            IAN Exchange
Most importantly:


 Become an essential
part of the participants‟
          lives.




                            IAN Exchange
But why do autism researchers need this?




                                    IAN Exchange
Because autism researchers come from….




                                  IAN Exchange
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
    A variety of institutions…

               Universities
                 Clinics
                Schools
                Hospitals
           Non-profits/NGOs
Governmental agencies from local to national

                    Etc.




                                               IAN Exchange
All over the world…




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




                                       IAN Exchange
How will the IAN Exchange help?




                                  IAN Exchange
 The IAN Exchange will provide secure online meeting rooms
where existing groups can discuss their projects and share and
      organize their documents and other digital assets



           Centers
          Networks
        Committees
  Professional Associations
     Boards of Directors
     Research Projects
     Multi-center studies
        Departments




                                                    IAN Exchange
 The IAN Exchange will provide Special Interest Areas (Cafes)
where ad hoc groups can discuss and share assets on topics of
                          interest.

             Immunology
         Maternal depression
        Cross-cultural attitudes
            Special diets
           FMRP deficiency
      Educational interventions
            Grant writers
  Research on adults with Asperger’s
         Autism and females
              Phenotypes
            Journal Clubs
      IAN Research Data Users
  IAN Research Subject Recruitment
            Assistance Users
       IAN Community Authors
    IAN Exchange Leaders Group

                 Etc.


                                                   IAN Exchange
The IAN Exchange will foster a self-organizing, community-rated,
      searchable library containing all manner of ‘assets.’

             Projects
             Findings
              Images
               Films
           Discussions
             Podcasts
            Documents
        PowerPoint Slides
               Ideas
              People
              Groups
             Lectures
     Online Learning Modules


              Etc.

                                                     IAN Exchange
  The IAN Exchange will build trust with the broader autism
community by allowing them to be observers of selected groups
                         and assets.




                                                   IAN Exchange
But better than that, the IAN Exchange will help you:
• Adapt to pace of change in creation and dissemination of
  knowledge
• Create a stronger synchrony of efforts
• Create a culture of shared responsibility
• Engage the public in the research agenda
• Address the ethical, legal, and social issues involved in autism
  research
• Foster the notion that data derived from the people should serve the
  public good


(Source: Derived from IOM Roundtable on Evidence-Based Medicine)



                                                         IAN Exchange
                                                                                                                                                                                                         Patient enters
                                               Parents Call KKI @ main intake                                                                                                                         clinic and is given
                                                      #: 443-923-3940                                                                                                                                  visitor badge by
                                                                                                                                                                                                             guard

                     New Patient:                                                            Return Patient:
                     new to KKI or                                                             a patient is                                                                                            Patient checks in
                     seen over 18                                                            seen in the last                                                                                        where they are given
                      months ago                                                               18 months                                                                                              general paperwork
                                                                                                                                                                                                     and assigned a KKI #
                                                   Intake Specialist fills out
                                                       the long form and                                        Call directed
                                                   makes referral decision,                                       to Care                                                                             Patient information
                                                   entering into AS400 but                                        Center                                                                                is entered into
                                                         not activating                                                                                                                                     AS400
                            They are
                                                                                             They are
                            referred
                                                                                              referred
                             outside
                                                                                             to CARD                                                                                                      Day One:
                             CARD
                                                                                                                                                                                                     Patient is directed to
                                             Intake specialist emails CARD Care                                                                                                                          waiting room
                                                                                                                Care Center
                                               Center long form and referral. A
                                                                                                                 creates a
                                             referral patient file is created as a T
                                                                                                                  referral
                                                        Note in AS400

                                                                                                                                                                                              Patient is given ADOS by SLP

                                             Long form and intake printed out @
                                               CARD Care Center, green chart
                                             created and sent to Lynn for referral                                                                                                                        Day Two:
                                                review. Data entered in CARD                                                                                                                          Patient is directed
                                                       Clinic Database.                                                                                                                                   to nursing



    CARD                                                                                                                                                                                               Patient goes to
recommends                     Referral is                                             Referral is                                                                                                      waiting room
  where to                      rejected                                               accepted
correctly refer
                                                                                                                                                                                                 Patient is seen by Doctor
                                                    Referral information is
                                                      activated in CARD
                                                     Clinic Database and
                                                         AS400, IAMS
                                                                                                                                                                          SLP Eval
                                                                                                                                                   Psych. Eval
                                                                                                                                                                           ADOS
                                                                                                                                                                                                              Soc. Work                 Consults
                                                                                                                                                                                              OT Eval
                                                    Acceptance phone call                                                                                                                                       Eval.
                                                    is made by care center
                                                             staff                                                                                                                                                                                                        Other Services

                                                                                                                                                                  Beh.
                                                                                                                                       Clinical      Neuropsych
                                                                                                                                                                  Psych
                                                    Acceptance letter and                                                             Psych Eval        Eval
                                                                                                                                                                   Eval                                                                                Behavioral
                                                    while you were waiting
                                                      letter sent by care                                       Returning patient                                                                     Social Work             OT       SLP           Intervention or
                                                                                                                directly calls Care                                                                                                                    Counseling
                                                          center staff
                                                                                                                    Center to
            Information                                                                                              schedule
                                                         Care Center                                               appointment                                                                                                                                             Short Term
       transmitted to CMO
                                                          schedules                                                                                                                                                                                                        Treatment
           for financial
                                                         appointment
        clearance, x37400



                                                     Reminder letter sent
       Benefits are checked
                                                       out two weeks in
       and family contacted
                                                      advance (currently                                                                                                                                       If HFA &                              If under
        regarding benefits                                                                                                                                                           If under five                                                                        Up to age 12
                                                      calling not mailing)                                                                                                                                     age 7-10                                 two:



       Care Center verifies
                                                        Patient enters
        that insurance is
                                                         clinic and is
        cleared, confirms
                                                         given badge                                                                                                                    Dyad                     BUDS          Hanen         Jump Start    Play with me      PEclinic
        appointment with
                                                           by guard
              family
Connecting institutional and national online registries
• Provides more longitudinal data to research centers at little extra
  cost to institution.
• Secures a long term relationship for the often one time encounters
• Provides a way to validate the data in the online registry
• Institutional registries can recruit from online registries and have
  standard data set to start
                                                              KONO
                                                                                                           Domain Specific
IAN Research                              Fragile X                              SWS                    Research Environment



   Common Informatics Platform, Sharing of Subjects and Content Where Appropriate



    Autism Speaks
         ASA                               Fragile X
     Pathfinders                                                         SW Foundation                                   ?
                                          Foundations
         Etc...




     Provide Funding, Promotion, Accountability, Advocate to NIH for resources and Share best practices (Online CoP)


      IAN Staff
 Steering Committee                   Registry Environment                Registry Environment                  Registry Environment
  Scientific Advisors                        Team B                              Team C                                Team D
   Parent Advisors


     Harmonization of Content, Shared Software Development, Shared Best Practices (Online CoP)




  Network Center A     Network Center B    Network Center C   Network Center D   Network Center E   Network Center F   Network Center G
                     Community of Professionals Supported by an Online Community of Practice


       RIS                  RIS                 RIS                RIS                RIS                RIS                 RIS




       EHR                  EHR                 EHR                EHR                EHR                EHR                 EHR




RIS=Research Information System=Inst. Registry+Repurpose EHR data + data from specific studies
     Institution Specific Connection to Online Research Environment for those subjects who consent
HER = Electronic Health Record, source of research data for those consented
Community of Practice (CoP) = Any network of professionals who actively share a knowledge base
Online CoP = A CoP supported the the power of online networking tools and knowledge management

				
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posted:10/31/2011
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