IAN ResearchDomain Specific

Research EnvironmentSWSFragile X

Common Informatics Platform, Sharing of Subjects and Content Where Appropriate

Autism SpeaksASA

PathfindersEtc...

?SW FoundationFragile X

Foundations

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

IAN StaffSteering CommitteeScientific AdvisorsParent Advisors

Registry Environment Team D

Registry Environment Team C

Registry Environment Team B

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

Network Center A

RIS

EHR

Network Center B

RIS

EHR

Network Center C

RIS

EHR

Network Center D

RIS

EHR

Network Center E

RIS

EHR

Network Center F

RIS

EHR

Network Center G

RIS

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 consentHER = Electronic Health Record, source of research data for those consentedCommunity of Practice (CoP) = Any network of professionals who actively share a knowledge baseOnline CoP = A CoP supported the the power of online networking tools and knowledge management

Community of Professionals Supported by an Online Community of Practice

KONO

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

Pew Internet & American Life Project Surveys, March 2000-April 2006.

IAN Conceived

IAN Launched

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 Growth0

5000

1000

015

000

2000

0In

divi

dual

s

0 2 4 6 8Weeks

updated 14 Jun 2007

Consented IAN Research Participants

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:

• ETHNICITYHispanic: 8.5 %Non-hispanic: 91.5 %

• RACEWhite 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%

17%

83%

Girl Boyupdated 14 Jun 2007

Gender of Children with ASD

Children with an Autism Spectrum Disorder (ASD)

• DIAGNOSIS:

45%

14%

29%

7%5%

Autism Asperger'sPDD-NOS PDDASD

updated 14 Jun 2007

Diagnoses of affected children

Siblings

• NUMBER: 4,039

• AGE: Average 8.0 years (SD 4.7)

Min 0.04 years, Max 17.99 years

• GENDER:

52%48%

Girl Boyupdated 14 Jun 2007

Gender of Children with ASD Gender of Siblings

Social Communication Questionnaire0

200

400

600

800

0 10 20 30 40 0 10 20 30 40

Not ASD ASD

Fre

que

ncy

SCQ ScoreGraphs by ASDcurrent

Specificity: 94.5% Sensitivity: 83.4%

Cut-off: 15 Cut-off: 15

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%

87%

13%

Mother Fatherupdated 14 Jun 2007

Gender of Participating Parents

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

IAN Exchange

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

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

IAN Exchange

• 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

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 peopleand brought them together in new collaborations in a brand new way

IAN Exchange

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

IAN Exchange

The Best:

Organize people, organizations, and groups.

The Best:

IAN Exchange

Provide tools that help professionals get their work done better

The Best:

IAN Exchange

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

The Best:

IAN Exchange

Provide mechanisms for groups and individuals to manage their

knowledge assets

The Best:

IAN Exchange

Create unprecedented partnerships

The Best:

IAN Exchange

Foster informal learning and exchange of

experiences.

Most importantly:

IAN Exchange

Become an essential part of the participants’

lives.

Most importantly:

IAN Exchange

Become an essential part of the participants’

lives.

But why do autism researchers need this?

IAN Exchange

Because autism researchers come from….

IAN Exchange

A variety of disciplines…

IAN Exchange

PsychiatryGenetics

NeurobiologyEducation

Anthropology Physical Therapy

PsychologyPediatrics

Occupational TherapyEpidemiologyPublic Health

PsychopharmacologySociology

Speech and Language

Etc.

A variety of institutions…

IAN Exchange

UniversitiesClinics

SchoolsHospitals

Non-profits/NGOsGovernmental agencies from local to national

Etc.

All over the world…

IAN Exchange

We publish in scores of journals…

IAN Exchange

American Journal of Medical GeneticsCurrent Opinion in Psychiatry

Journal of Neuroscience ResearchJournal of Abnormal Child Psychology

Journal of Autism and Developmental DisordersArchives of General Psychiatry

Clinical EndocrinologyCNS Spectrums

PediatricsPediatric Clinics of North America

Biological PsychiatryAmerican Journal of Mental Retardation

Pediatric NursingJournal of Child Language

Epilepsia

Etc.

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

IAN Exchange

CentersNetworks

CommitteesProfessional Associations

Boards of DirectorsResearch Projects Multi-center studies

Departments

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

interest.

IAN Exchange

ImmunologyMaternal depression

Cross-cultural attitudesSpecial diets

FMRP deficiencyEducational interventions

Grant writersResearch on adults with Asperger’s

Autism and femalesPhenotypes

Journal ClubsIAN Research Data Users

IAN Research Subject Recruitment Assistance Users

IAN Community AuthorsIAN Exchange Leaders Group

Etc.

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

IAN Exchange

ProjectsFindingsImagesFilms

DiscussionsPodcasts

DocumentsPowerPoint Slides

IdeasPeopleGroups

LecturesOnline Learning Modules

Etc.

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:

IAN Exchange

• 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)

Parents Call KKI @ main intake #: 443-923-3940

Intake Specialist fills out the long form and

makes referral decision, entering into AS400 but

not activating

They are referred outside CARD

They are referred to CARD

Intake specialist emails CARD Care Center long form and referral. A

referral patient file is created as a T Note in AS400

Long form and intake printed out @ CARD Care Center, green chart

created and sent to Lynn for referral review. Data entered in CARD

Clinic Database.

Referral is rejected

Referral is accepted

CARD recommends

where to correctly refer

Referral information is activated in CARD

Clinic Database and AS400, IAMS

Acceptance phone call is made by care center

staff

Acceptance letter and while you were waiting

letter sent by care center staff

Care Center schedules

appointment

Reminder letter sent out two weeks in

advance (currently calling not mailing)

Information transmitted to CMO

for financial clearance, x37400

Benefits are checked and family contacted

regarding benefits

Care Center verifies that insurance is cleared, confirms appointment with

family

Patient enters clinic and is given badge

by guard

New Patient: new to KKI or seen over 18 months ago

Return Patient: a patient is

seen in the last 18 months

Call directed to Care Center

Care Center creates a referral

Returning patient directly calls Care

Center to schedule

appointment

Patient enters clinic and is given visitor badge by

guard

Patient checks in where they are given general paperwork

and assigned a KKI #

Patient information is entered into

AS400

Day Two:Patient is directed

to nursing

Day One:Patient is directed to

waiting room

Patient is seen by Doctor

Consults

Hanen Jump Start PEclinicPlay with me

Short Term Treatment

BUDSDyad

If under two:

If HFA & age 7-10

If under five Up to age 12

SLP EvalADOS

Other Services

Psych. Eval

Clinical Psych Eval

Neuropsych Eval

Beh. Psych Eval

Social Work OT SLPBehavioral

Intervention or Counseling

OT EvalSoc. Work

Eval.

Patient goes to waiting room

Patient is given ADOS by SLP

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

IAN ResearchDomain Specific

Research EnvironmentSWSFragile X

Common Informatics Platform, Sharing of Subjects and Content Where Appropriate

Autism SpeaksASA

PathfindersEtc...

?SW FoundationFragile X

Foundations

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

IAN StaffSteering CommitteeScientific AdvisorsParent Advisors

Registry Environment Team D

Registry Environment Team C

Registry Environment Team B

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

Network Center A

RIS

EHR

Network Center B

RIS

EHR

Network Center C

RIS

EHR

Network Center D

RIS

EHR

Network Center E

RIS

EHR

Network Center F

RIS

EHR

Network Center G

RIS

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 consentHER = Electronic Health Record, source of research data for those consentedCommunity of Practice (CoP) = Any network of professionals who actively share a knowledge baseOnline CoP = A CoP supported the the power of online networking tools and knowledge management

Community of Professionals Supported by an Online Community of Practice

KONO