How is the VKC doing?

Great!

But we could be even greater

Why are we so great?

•Past: Historical roots

•Present: People, resources, needs

•Future: How could we be even greater?

Why are we so great?

Rich historical legacy

VKC second of 12 research centers in 1965

Funding for VKC, Hobbs Lab

Saturday Evening Post, 1962

Special Olympics, 1968

Eunice Kennedy Shriver National Institutes of ChildHealth and Human Development

Current work, expansion of Special Olympics movement

Fast forward 45 years

Fast forward 45 years

Longest behavioral science training grant in IDDNICHD core grant for

research

Nicholas Hobbs, Don Stedman, H. Carl Haywood,Alfred Baumeister, Steve Warren,

Travis Thompson, Pat Levitt

Why are we doing great now?• Vanderbilt University

•University-wide

• Supportive, facilitative administrators

• Talented, interdisciplinary faculty, staff, trainees

• Federal grants for VKC infrastructure

•Mission-driven

Vanderbilt Kennedy Center

To facilitate discoveries and best practices that make positive differences in the lives of persons with developmental disabilities and their families

1 in 5 children has a developmental disability

Renewed importance of mission

Multiplier Effects

• 1 in 5 children ...

• Become 1 in 5 adults

• 20% of parents in US

• Grandparents, aunts, uncles, cousins, brothers, sisters, friends, neighbors

• No one is left untouched

• Equal opportunity experience: we all have different abilities, all experience disabilities

VKC leading the way to integrate research, service, training in intellectual and

developmental disabilities

–EKS Intellectual and Developmental Disability Research Centers (IDDRC’s)

–University Centers of Excellence in Developmental Disabilities (UCEDDs)

–Leadership and Education in Neurodevelopmental Disabilities (LEND)

IDDRC Core Services:

• NICHD P30 provides core services to researchers in

• Administrative Services

• Basic Neuroscience

• Biostatistics

• Clinical Neuroscience

• Participant Recruitment and Assessment

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A: Administrative Services

Grants pre and post award

Facilities

Space

Technology & software

Communication

Web

Events

Graphics

VUMC development

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BCore B: Basic Neuroscience

Confocal & light microscopy & imaging;

Neurochemistry & neurogenomics;

Mouse behavioral phenotyping;

Molecular neurobiology;

Scientific instrumentation;

Mouse tail genotyping

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C: Biostatistics

Statistics clinics

Expertise in behavioral, genomic,

imaging, and psychophysiological analyses;

Manuscript and review consultations

Grant preparation - power analyses,

statistical approach, design

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D: Clinical Neuroscience

Neuroimaging

Sleep and circadian rhythm

Psychophysiology lab

E: Participant Recruitment, Assessment

Developmental Epidemiology, State Databases

Psychological Assessment, Training

Participant Recruitment; StudyFinder

Research Family Partners

VKC IDDRC Research Areas

Basic Mechanisms

Health and Well-Being

Cognition, Language, Learning

Impact of Disabilities Across the Life Span

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NICHD-IDDRC News

• Change in leadership at NICHD• P30 budget cuts (6%)• Very modest ARRA P30 supplement • VKC competitive renewal in 4 years • Change P30 RFA to reflect centers • beyond a collection of cores

VKC Center of Excellence • In 2005, University Center of Excellence in

Developmental Disabilities (UCEDD)

• One of 67 UCEDD’s nation wide supported by the Administration on Developmental Disabilities, HHS

Four core functions of all UCEDDs– Training– Research– Service/Technical Assistance– Dissemination

The VKC UCEDD

VKC UCEDD

•Focus on systems change

• State and community partners

• Community Advisory Council

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5 Areas of UCEDD Emphasis

• Education and Early Intevention

• Employment

• QOL

• Health, Mental health

• Recreation and the Arts

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47 community outreach, clinical programs

• Reading Clinic • Sibling supports• Social work services • TRIAD Autism Clinics • TN Disability Pathfinder• Hispanic Outreach • Monroe Carell Jr. Families First• Down and other genetic syndromes • Disability, Religion and Spirituality • Administrative law judges training• Access Nashville• Behavioral Health and ID• Arts, camps

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LEND

• Leadership Education in Neurodevelopmental Disabilities (LEND)–Maternal and Child Health Bureau

• Interdisciplinary training in disabilities for health and allied health professionals –Terri Urban, PhD, RN and Tyler Reimschisel, MD

• Expansions in Autism and Hearing Impairments

Super UCEDD and LEND Trainees!

• Statewide advocacy training with parents

• Statewide surveys on siblings, religion and spirituality, needs assessments

• Meta analyses of 5-year plans from state and other DD agencies

• Mayor’s Task Force on Special Education

• Program evaluations

• Leading Access Nashville Trainings

• Attending disability policy days on the Hill

Three separate componentsVKC one of a few to have all three

That work together

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• Separate strands (IDDRC, UCEDD, LEND) woven together in service of VKC research, service, training missions in IDD

• “Let there be spaces in your togetherness”

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• IDDRC director’s retreats• Three initiatives across 14 IDDRC’s• 1. Core Interactions• 2. Training• 3. Registries

VKC has unique history and place in national network to integrate strands

Impetus from NICHD, ADD for IDDRCs and UCEDD to work together clinical research, human recruitment, dissemination

VKC InterdisciplinaryResearch, Training, and Service

• 285 investigators, faculty members, staff

• 20+ departments

• Genes…

• Brain…

• Behavior…

• Intervention…

• Family support..

• Communities…

• Public policies...

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Next steps: Building on success

• Basic mechanisms

• Shared mechanisms, processes across etiologies of IDD

• MECP2, 15q disorders and “Studio 15q”, UBE3A, hyperphagia

• Induced pluripotent stem cells

• Brainstorming: Music and Brain; Down syndrome, Autism Journal Clubs

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• Behavioral/neural tasks across humans and animal models of same IDD (fraX, AS, PWS)

• Peabody Educational Neuroscience Initiative

• Neural functioning: Growing numbers examining imaging and ERP in –autism spectrum disorders, baby sibs, learning

disabilities (reading, math), Angelman syndrome, Prader-Willi-syndrome, Williams syndrome, Down syndrome

• Keys to success in methods?

•Annual VKC Science Day

•IDDRC NationalNetwork Training

•National Gatlinburg Conference on Researchon Intellectual Disabilities

Building success in the next generation of IDDResearchers Training

Hobbs Discovery Grants

• Hobbs Society Discovery Grant Program

• 4 to 6 awards annually

• Critically important pilot data for larger grant applications

• Gives researchers a leg up for federal grant competitions

• Dramatic, $35-40 fold return on each dollar investment

Next Steps--Building on success in Autism

• Research (genetics, basic mechanisms, early identification, baby siblings, treatment)

• Parent and teacher education, training

• Clinical evaluations

Autism Spectrum Disorders -TRIAD

1 in 150 or 110 or 91?

NIH Funding for Developmental Disabilities

NIH Funded Down Syndrome Studies 2009-2010

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STRIDS?• Service, Treatment, Research in Down

syndrome?

• Two VKC community forums

• NIH and CDC Blueprints

• Larger networks,

• center within center model?

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Research-Based Summer Camps

• Camp Shriver – Transition, Sports Employment

• Autism Spectrum – Social skills • ACM Lifting Lives: Williams Syndrome

Music Camp

Moving forward: research,service and training woven together

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Next Steps: Building on success

• Health and mental health

• Research infrastructure in Down syndrome Clinics

• Research registry for families in Developmental Medicine, VKC-TRIAD autism clinics

• Research and “tool kit” in BHID-V

• Autism Treatment Network

• ASD screening, physician trainings 41

Research and Treatment Gaps

Research and treatment disparities and gaps(polypharmacy, ID turned away from treatment)Surgeon General Satcher’s blueprint for change and call to action

Healthy Athletes Screening

• 3,500 athletes from 145 nations screened at 2003 Special Olympics World Games in Dublin

Vision• 30% did not pass distance vision screening• 18% did not pass near vision screening

• 6X higher than age-peers in general

• Of these, less than half had glasses• 43% of US athletes needed new glasses

Mental Health Disparities

• Refusal to treat those with ID is problematic

• Adults leaving developmental centers in Middle TN average 9 different psychotropic medications

• Approximately 40% of incarcerated adults in Davidson County Mental Health Court have ID, psychiatric disorders, and substance abuse –VKC-Psychiatry John Merck Fund Behavioral Health

and Intellectual Disabilities Clinic

–VKC Behavioral Analysis Clinic

Next Steps: Physician Training

• Of 2,500 medical students and medical school Deans surveyed–Only 12% of medical school students reported

training in IDD–28% felt confident in treating those with DD–Deans felt they should have training, but not a

high priority

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Building on Vanderbilt’s strengths: Personalized

Medicine• Genetics or other biomarkers to optimize

treatment, treatment match a profile, treat earlier, or coach to make lifestyle changes to reduce disease risk

• Personalized medicine of IDD? Autism? Fragile X? Prader-Willi syndrome?

• CYP450 testing for psychotropic medications?

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Next Steps: Undergraduates• Often in labs independent or honor study

• Challenge for Center versus department

• Marked, increased interests in IDD

• Over 50 Ambassadores for Next Step students

• Best Buddies and alternative spring breaks

• Disability studies or Immersion program

• Supervised service learning and volunteers47

COMMUNICATION AND DISSEMINATION FOR ALL PROGRAM COMPONENTS

Research seminars, conferences, workshops, and outreach events

Tips fact sheets, manuals, and other support for research and outreach projects

PRODUCTS

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VKC Science Day 2011.....

Basic mechanisms underlying multiple etiologies of IDD

Neurological functioning in people with various IDDs

Educational Neuroscience

National IDDRC networks: 1. Core to core interactions2. Training in translational research3. Family, patient registries4.Center within center for DS?

Gatlinburg Meetings 2011-2016

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Promoting mental health and well-being

Training to reduce health disparities

Personalized medicine of IDD

Integration of research, service, training

Music and the Arts

Undergraduates

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Thank you

• 285 investigators, faculty members, staff, affiliates who collectively ensure that the VKC has a “tremendous thrust forward for the good”

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