How is the VKC doing? Great! But we could be even greater.
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Transcript of How is the VKC doing? Great! But we could be even greater.
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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