Slide1: Center for Autism Developmental Disabilities Research and Epidemiology Funded by Centers for Disease Control and Prevention (CDC)


Slide2: Children’s Health Act of 2000 The 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


Slide3: CA 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


Slide4: Special Education


Slide5: California Department of Developmental Services 633% increase in ASD Clients


Kaiser Permanente Northern CaliforniaPrevalence per 1,000 2-18 year olds: Kaiser Permanente Northern California Prevalence per 1,000 2-18 year olds


Slide7: Possible Explanations for Observed Increase Changes in diagnostic criteria Improvements in case recognition Increased awareness of service delivery system True increase in incidence


Surveillance: Surveillance CA CADDRE conducted autism surveillance as part of the national CDC ADDM/CADDRE network to establish standardized prevalence rates and track trends over time


Slide9: Multi-source surveillance Single source surveillance


Multi-source Case Definition: Multi-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


Ascertainment Sources: Ascertainment 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


Multi-source Surveillance: Multi-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


ADDM Results: ADDM 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.


Surveillance: Surveillance Monitoring Early Childhood Autism (MECA)


MECA Overview: MECA 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


Research: Neonatal Antibodies to Infectious Agents and Risk of ASD Research


Background: Background 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.


Methods: Methods 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


Conclusions: Conclusions 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.


Research: Investigating Air Pollutants in Relation to Autism in the San Francisco Bay Research


Background: Background 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


Methods: Methods 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


Slide25: HAPs 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


Slide26: Conclusions 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


Research: Childhood Autism Perinatal Study (CHAPS) Research


CHAPS: CHAPS 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


CHAPS Publications: CHAPS 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


CADDRE Outreach and Education: CADDRE Outreach and Education


Parent Handbook: Parent Handbook New printing available on March 01 English Spanish Vietnamese Chinese


CADDRE Brochure and Autism Cards: CADDRE Brochure and Autism Cards


Bay Area Pocket Guide: Bay Area Pocket Guide


Slide34: Study to Explore Early Development (SEED)


Research and Clinical Medicine Collaboration : Research 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


Slide36: Study 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.


Slide37: Research Questions Physical and behavioral characteristics Infection and immune function Reproductive and hormonal features Gastrointestinal features Sociodemographics Genetics


Slide38: California 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)


Slide39: Case / 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


Slide40: Study 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


Slide41: Data 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


Study Values: Study 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)


Clinic Visits: 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


Family Compensation: Family 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


Slide45: Study Timeline


For more information…. : For 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


Community Advisory Board (CAB): Community 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 E&O 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