Title: Center for Autism Developmental Disabilities Research and Epidemiology
1Center for Autism Developmental Disabilities
Research and Epidemiology
Funded by Centers for Disease Control and
Prevention (CDC)
2Childrens Health Act of 2000The efforts of
parent advocates and national legislature
- Established Centers of Excellence for Autism
Epidemiology (CDC/CADDRE) - California North Carolina
- Colorado Pennsylvania
- Maryland/Delaware
-
- 6th site is in Atlanta
3CA CADDRE Goals
Track Autism Spectrum Disorders (ASD) in
California Conduct research studies in
California and with other CADDRE centers Build a
resource and improve knowledge about ASD in
California
4Special Education
5California Department of Developmental
Services 633 increase in ASD Clients
6Kaiser Permanente Northern CaliforniaPrevalence
per 1,000 2-18 year olds
7Possible Explanations for Observed Increase
- Changes in diagnostic criteria
- Improvements in case recognition
- Increased awareness of service delivery system
- True increase in incidence
8Surveillance
- CA CADDRE conducted autism surveillance as
part of the national CDC ADDM/CADDRE network to
establish standardized prevalence rates and track
trends over time
9Multi-source surveillance
Single source surveillance
10Multi-source Case Definition
- Birth residence in 6 county SF Bay Area (80,000
births/year) validated by vital records - Born in 1994 or 1996
- Identified through records of multiple
- sources
- ASD diagnosed before 9th birthday, then confirmed
by chart review - Expert review to resolve suspect diagnoses
11Ascertainment Sources
- Dept. of Developmental Services/Regional Centers
(DDS/RC) - Kaiser Permanente
- Hospital child development and PDD clinics
- Community clinics and assessment centers
- Private physicians/specialists
- NOT able to access school records due to FERPA
12Multi-source Surveillance
- Completed review of hundreds of charts at
multiple sources - Completed expert review of abstracted info
- Finalizing analyses
- Results to be released by Fall 2007
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15ADDM Results
- The average finding of 6.6 and 6.7 per 1,000
eight-year-olds translates to approximately one
in 150 children in these communities. - This is consistent with the upper end of
prevalence estimates from previously published
studies, with some of the communities having an
estimate higher than those previously reported in
U.S. studies.
16Surveillance
- Monitoring Early Childhood Autism (MECA)
17MECA Overview
One year planning grant to develop methods to
track the number of children less than 4 yrs of
age with an ASD in Santa Clara County Includes
strategies for increasing community and public
health awareness of ASDs and improving early and
consistent identification of ASDs
18Research
Neonatal Antibodies to Infectious Agents and
Risk of ASD
19Background
- Limited evidence indicates that infectious
exposure during pregnancy may be etiologically
important in schizophrenia and other psychiatric
disorders. - Exposure to infectious agents during pregnancy
has been hypothesized to contribute to ASD, but
studies with biologic assays are lacking. - IgG antibodies in newborns are obtained
transplacentally and are markers for maternal
exposure to viruses and other infectious agents.
- IgM and IgA antibodies in newborns are produced
by the fetus and correlate with active perinatal
infection.
20Methods
- Used 1994 multi-source ASD surveillance cases
- Randomly sampled controls from birth certificate
files - Obtained newborn blood spots
- Measured levels of antibodies to several
infectious agents
21Conclusions
- No evidence that exposure of mother to specific
viruses or other infections during pregnancy or
at delivery are major causes of autism in a CA
population. - Some evidence that Toxo IgG and total IgG are
lower at birth in children with ASD than in
control children from the same population. - Possible explanations for lower levels of Toxo
and total IgG antibodies include lower maternal
exposure, maternal immune dysfunction, or lower
transplacental transfer.
22Research
Investigating Air Pollutants in Relation to
Autism in the San Francisco Bay
23Background
- ASD has a strong genetic component, but
environmental factors may also play a role in
cause - USEPA has modeled concentrations of hazardous air
pollutants (HAPs) nationwide - Goal Link CA CADDRE autism surveillance data to
HAPs data in San Francisco Bay Area to look for
possible environmental influences
24Methods
- Identified 341 potential case records
- Selected 2 controls/case from livebirths, matched
by gender and month - Abstracted birth address from birth certificate
- Geo-coded addresses to assign census tract
- Linked to HAPs data by census tract
25HAPs Background
- No monitoring data available on low-level,
chronic exposures to air toxics - EPA model estimates annual average concentrations
for each census tract in the U.S. - Based on Emissions from
- point sources (e.g. a power plant, dry cleaners
and gas stations) - mobile sources (e.g. cars, locomotives, boats,
lawn and garden equipment) - Factors in meteorological data, decay rates, and
deposition
26Conclusions
- More cases likely to be born in areas with
higher estimated metals concentration - Cases also more likely to be born in areas with
higher chlorinated solvent concentrations - Diesel particulate matter may also be associated
with case status, but less prior plausibility - Further research is necessary to address study
limitations and confirm findings
27Research
Childhood Autism Perinatal Study (CHAPS)
28CHAPS
- Case-Control Study
- Children born in Kaiser Permanente 1995-1999
- At least 2 years of health plan membership
following birth - 420 with ASD, 2100 controls
- Examining prenatal, perinatal, neonatal factors
- Maternal and child medical record review,
electronic databases
29CHAPS Publications
- Maternal autoimmune and allergic diseases
- Psoriasis, allergy, and asthma around the time of
pregnancy more common in mothers of children with
ASD - Neonatal jaundice
- Not more common in children with ASD
- Congenital anomalies
- More common in children with ASD
- Maternal and Paternal Age
- Risk of ASD increased for children with older
parents - Postnatal infection
- Not more common in children with ASD
30CADDRE Outreach and Education
31Parent Handbook
- New printing available on March 01
- English
- Spanish
- Vietnamese
- Chinese
32CADDRE Brochure and Autism Cards
33Bay Area Pocket Guide
34Study to Explore Early Development (SEED)
35Research and Clinical Medicine Collaboration
- Kaiser Permanente (KP), Division of Research
- KP Autism Spectrum Disorders Center, Santa Teresa
- Department of Developmental Services (DDS)
- Regional Center of the East Bay
- San Andreas Regional Center
- California Department of Health Services,
Environmental Health Investigations Branch
Painting by a child with ASD
36Study Introduction
- SEED is the largest collaborative scientific
study to date of risks and causes of autism. - 2,700 children and their parents.
- Six areas across the county California,
Colorado, Georgia, Maryland, North Carolina,
Pennsylvania.
37Research Questions
- Physical and behavioral characteristics
- Infection and immune function
- Reproductive and hormonal features
- Gastrointestinal features
- Sociodemographics
- Genetics
38California Enrollment
- 2 to 5 year olds
- English and Spanish speaking
- 150 children with ASD (Case)
- 150 neurodevelopmentally impaired controls (NIC
cohort) - 150 general population controls ascertained from
California live birth records. (Subcohort)
39Case / NIC Identification
- Kaiser Permanente of Northern California
- Department of Developmental Services/Regional
Centers (DDS/RC) - RCEB
- SARC
Regional Centers provide services without regard
to citizenship or financial status
40Study Area
- Alameda and Santa Clara Counties
- Birth residence and current residence
- Well established and integrated system of
diagnostic and support services for children at
risk for developmental disabilities
Study Area is 31 Hispanic, 30 White
non-hispanic, 23 Asian, 8 Black
41Data Collection
- Child development evaluation
- Child dysmorphology exam
- Biological samples buccal cells, venous blood,
hair - Medical record abstraction
- Primary caregiver telephone interview
- Primary caregiver self administered questionnaires
Data collection will be scheduled according to
what works best for families
42Study Values
- Data collection with the interest of families and
children in mind - Flexibility with scheduling
- Staff has extensive experience with
developmentally disabled children (interviewers,
recruiters, clinical assessors, phlebotomists)
43 Clinic Visits
- KP Santa Teresa ASD Center in San Jose
- ASD families 1 day
- NIC families ½ day
- Control families ½ day
Kaiser Santa Teresa
44Family Compensation
- Participants will be compensated at a rate of
30.00/hour - Rate from focus groups in California and Georgia
- Each study component has estimated time
completion associated - 200.00 for subcohort/NIC group
- 310 for case group
- Travel expenses are reimbursed
45Study Timeline
46For more information.
- Call California CADDRE / SEED phone message line
- (510) 620-3700
- Lisa Croen, PhD, Principal Investigator
- (510)-891-3463
- For Community Advisory Board, Call Lori Copan,
Community Participation Coordinator - (510)-620-3631
-
47Community Advisory Board (CAB)
- CAB members include parents with child
affected by autism or developmental delay,
clinicians and community providers - Provide advice on working with families and
ensuring their participation - Help develop and disseminate EO materials,
consent forms and other documents - Represent CADDRE at public events, meetings
- Act as a liaison between CADDRE and the agency
or community each member represents - We are currently recruiting CAB members