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Research Projects at DOR

The reported prevalence of autism spectrum disorders (ASD) has increased dramatically over the last 3 decades, from an estimate of 4-5 per 10,000 in the 1980s to nearly 1.5% today, making autism the second most common developmental disability in the United States, behind mental retardation. Several factors have contributed to this upward trend, including an expansion of diagnostic criteria, increased awareness, improved detection and increased availability of diagnostic and intervention services.

While the causes of ASD are unknown, a significant body of research provides evidence for a strong and complex genetic contribution. The possibility that the rising rates also represent an increase in incidence cannot be ruled out, suggesting a likely role for environmental factors operating in partnership with genetic susceptibility.

As is indicated below, our research focuses primarily on identifying genetic and environmental risk factors for ASD, and understanding patterns of detection, diagnosis, and utilization of health services for ASD. Click here to learn about other autism research.

Title Type Status Eligibility
Air Pollution, MET Genotype and ASD Risk: GxE Interaction in the EMA Study Causes/Risk Factors Data analysis only  
Autism Family Biobank ASD Family Biobank for Genomic and Epidemiologic Analysis Recruiting Kaiser Permanente Members diagnosed with ASD and BOTH their biological parents willing to donate biological samples
Autism Spectrum Disorders in Preterm Infants      
Autism Treatment Network Diagnosis/Detection
Medical Care
Recruitment closed  

California Autism Twins Study

Causes/Risk Factors

Recruitment closed

 

Childhood Autism Perinatal Study (CHAPS)

Causes/Risk Factors

Data analysis only

 

Development of a Brief Screener for Research Diagnoses of ASD

Diagnosis/Detection Recruitment closed 2-17 year olds evaluated at the KP San Jose ASD Center

Diverse Autism Registry for Effectiveness Studies

Diagnosis/Detection
Medical Care

Recruitment closed  

Early Autism Risk Longitudinal Investigation Study (EARLI)

Causes/Risk Factors

Recruitment closed

Women <28 weeks pregnant who have a child with ASD

Early Life Medical Co-morbidities and Health Care Utilization Patterns among Children with ASD Associated Conditions Data analysis only  

Early Markers for Autism

Causes/Risk Factors

Data analysis only

 

Immune-Related Co-Morbidities in Autism Spectrum Disorders

Causes/Risk Factors

Data analysis only

 

Medical Conditions and Co-Morbidities Associated with ASD in Adulthood Associated Conditions Data analysis only  
A Mixed Methods Approach to Evaluating ASD Interventions in KPNC Diagnosis/Detection
Medical Care
Planning  

Monitoring of Early Childhood Autism

Diagnosis/Detection

Data analysis only

 

Partnership for Research & Dissemination of Evidence-Based Medicine in Autism Education/Outreach Ongoing  
Prenatal PBDE exposure and ASD-related developmental outcomes in the EARLI cohort Causes/Risk Factors Data analysis only  
Short Inter-Pregnancy Interval and Risk of Autism Spectrum Disorders Causes/Risk Factors Data analysis only  

Study to Explore Early Development (SEED)

Causes/Risk Factors

Recruiting

2-5 year olds born and currently residing in Alameda or Santa Clara counties

Study Descriptions

Air Pollution, MET Genotype and ASD Risk: GxE Interaction in the EMA Study
New reports suggest a genetic-environmental interaction between perinatal exposure to traffic-related air pollution, the MET rs1858830 SNP, and ASD risk.  We propose to complete MET rs1858830 SNP genotyping on all mom-child duos in the EMA Study and determine perinatal exposure to traffic related air pollution. In order to 1) examine the main effect of air pollution exposure on ASD risk, 2) replicate the interaction of air pollution exposure and child MET rs1858830 genotype in ASD and explore this risk in DD, 3) investigate the interaction of air pollution exposure and maternal MET rs1858830 genotype in ASD and DD risk, and 4) evaluate the role of maternal immune dysregulation in ASD in the context of perinatal air pollution exposure and MET genotype.

Funders: Autism Speaks
Site Principal Investigator: Lisa Croen, PhD

Autism Spectrum Disorders in Preterm Infants
The goals of the Autism Spectrum Disorders in Preterm Infants study are to investigate the incidence of ASD by gestational age in infants born prematurely, compare the incidence of ASD in premature infants to the incidence in term infants, and identify risk factors for the development of ASD in premature infants.

Funder:  Kaiser Permanente Community Benefits Program
Principal Investigator: Michael Kuzniewicz, MD, MPH, Kaiser Permanente Division of Research

Autism Treatment Network 
The Kaiser Permanente San Jose ASD Center is one of 15 treatment and medical centers in North America working together, through the Autism Treatment Network (ATN), to improve medical care for children and adolescents with autism. The goal of the ATN is to establish standards of clinical care for medical co-morbidities based on research and shared clinical experience.  All ATN centers offer care from doctors highly experienced in treating patients with autism and dedicated to sharing their knowledge with the medical community. Doctors use a common protocol to conduct comprehensive evaluations of children with autism, and an anonymous database with participant clinical information provides essential data for research that evaluates and tracks patient care. This information is then used to develop protocols and standards. At the San Jose ASD Center, a total of 200 pediatric patients diagnosed with an ASD were enrolled in this study. For information about the national ATN project, click here.

Funders:  Autism Speaks, HRSA
Site Principal Investigators:  Lisa Croen, PhD; Pilar Bernal, MD

California Autism Twins Study 
The California Autism Twins Study (CATS) is a collaborative study with Stanford University that seeks to determine causes and risk factors of ASDs. For this study, we enrolled families with twins throughout California to learn whether some of the characteristics of autism, including impairments in social interaction, language, and learning, are shared between twins. We hope this information will help determine which characteristics of ASDs are more influenced by genetics and which are more influenced by other factors. For a Q & A summary of the study, click here.

Funder: National Institute of Mental Health (NIMH)
Collaborators: Stanford University (lead); Kaiser Permanente Division of Research; University of California, San Francisco; Autism Genetic Resource Exchange (AGRE); the Medical Investigation of Neurodevelopmental disorders Institute (MIND); and the California Department of Public Health.
Site Principal Investigator: Lisa Croen, PhD

Childhood Autism Perinatal Study (CHAPS) 
The Childhood Autism Perinatal Study (CHAPS) is a case-control study investigating whether there are factors before pregnancy, during pregnancy, or soon after birth that increase the risk of autism. For this study, investigators are reviewing and analyzing electronic medical record data from 2,520 children born at Kaiser Permanente hospitals between1995 and 1999 and their mothers.  Several prenatal, perinatal and neonatal factors are being evaluated, including maternal illnesses and medication use during pregnancy, complications during pregnancy, and infant characteristics.

Funder: The Centers for Disease Control and Prevention, Kaiser Permanente Community Benefit, and Autism Speaks 
Principal Investigator: Lisa Croen, PhD

Development of a Brief Screener for Research Diagnoses of ASD 
The Development of a Brief Screener for Research Diagnoses of ASD is collaboration between Kaiser Permanente's Division of Research, the University of Michigan, and Cincinnati Children's Hospital Medical Center. The study aims to create a short screening questionnaire for research that will identify children who are likely to have an ASD.  Because this instrument will be brief, based on parent report, and appropriate for screening children ages 2 to 18, it will facilitate participant recruitment for future ASD studies.  A version of the research instrument, called the ADI-Q, is currently being piloted with parents of children who have been referred to the San Jose ASD Center. 

Funder:  National Institute of Mental Health (NIMH)
Collaborators:  Kaiser Permanente Division of Research; University of Michigan, Cincinnati Children's Hospital Medical Center.
Principal Investigator:  Catherine Lord, PhD, University of Michigan
Site Principal Investigator:  Lisa Croen, PhD

Diverse Autism Registry for Effectiveness Studies
A Diverse Autism Registry for Effectiveness Studies is a research study that is part of the Mental Health Research Network.  The goal of the study is to create a large, comprehensive and dynamic autism spectrum disorder (ASD) registry across several integrated health systems.  The first phase of the study will look at variability across the participating health plans in the prevalence of ASD, in medical and psychiatric co-morbidities in the ASD population, and in the use of psychotropic medications to treat children and adolescents with ASDs.  The second phase will look at different treatment approaches, and treatment burdens for families of children with ASD, and parental perceptions of the efficacy of different treatments.  During the second phase of the study, parents of children diagnosed with an ASD who are Kaiser Permanente members will be invited to complete a Web survey and contribute a blood or saliva sample for future ASD research. 

Funder:  National Institute of Mental Health
Collaborators:  Kaiser Permanente Northern California (Division of Research), Kaiser Permanente Southern California (Dept. of Research and Evaluation), Kaiser Permanente Northwest (Center for Health Research, Northwest), Kaiser Permanente Georgia (Center for Health Research, Southeast), and Harvard Pilgrim Health Care.
Principal Investigator:  Lisa Croen, PhD

Early Autism Risk Longitudinal Investigation Study 
The Early Autism Risk Longitudinal Investigation (EARLI) study is a large multi-center study that seeks to identify causes and risk factors for ASDs.  The study is enrolling a group of mothers of children with an autism spectrum disorder at the start of another pregnancy.
The goal is to collect data on 1,000 mothers throughout their pregnancy and on the newborns through three years of age. Researchers will examine environmental exposures, genetic factors, and biological markers present during pregnancy and early life that may play a role in the development of ASDs. For information about the EARLI Study at Kaiser Permanente, click here. For information about the national EARLI Network, click here.

Funder: National Institutes of Health (NIH), Autism Speaks
Collaborators: Drexel University; Kaiser Permanente Northern California, Division of Research; Johns Hopkins University/Kennedy Krieger Institute; and University of California at Davis/MIND Institute.     
Network Principal Investigator: Craig Newschaffer, PhD, Drexel University
Site Principal Investigator: Lisa Croen, PhD

Early Life Medical Co-morbidities and Health Care Utilization Patterns among Children with ASD
The aims of this project are to examine health care utilization patterns and medical co-morbidities experienced by children before being diagnosed with an Autism Spectrum Disorder (ASD).

Funder: AutismSpeaks Cooperative Agreement
Principal Investigator: Lisa Croen, PhD

Early Markers for Autism 
The goal of the Early Markers for Autism (EMA) study is to identify biologic factors that can be used to predict which children will have an ASD.  Researchers are analyzing maternal blood collected during mid-pregnancy and infant blood collected at birth from children with ASD, children with mental retardation, and typically developing children.  Investigators are examining a wide range of factors, including genetic factors, immune system factors, hormone levels, and environmental exposures.

Funder: National Institute of Mental Health (NIMH), National Institute of Environmental Health Sciences (NIEHS), National Alliance for Autism Research (NAAR), Autism Speaks
Collaborators: Kaiser Permanente Division of Research; the California Department of Public Health; the Centers for Disease Control and Prevention (CDC); and scientists at UC Davis, UCSF, Utah State University, and Johns Hopkins University. 
Principal Investigator: Lisa Croen, PhD

Immune-Related Co-Morbidities in Autism Spectrum Disorders
The major goal of the Immune-Related Co-Morbidities in Autism Spectrum Disorders study is to learn how often immune-related conditions, such as asthma, allergy, and autoimmune disease, occur in children with autism.

Funder:  Kaiser Permanente Community Benefits Program
Principal Investigator: Lisa Croen, PhD

Medical Conditions and Co-Morbidities Associated with ASD in Adulthood
Using comprehensive electronic medical record data for the population of adult members of the Kaiser Permanente Medical Care Program in Northern California (2.5 million), this project will describe the prevalence of autism spectrum disorders (ASD) in adults 18 years and older, and investigate the frequency of other medical and psychiatric conditions and utilization of medications among adults with ASD.

Funder: Special Hope Foundation
Principal Investigator: Lisa Croen, PhD

A Mixed Methods Approach to Evaluating ASD Interventions in KPNC
This study leverages existing data and operations of an ongoing clinical program serving a diverse population. Quantitative and ethnographic methods will help identify factors influencing participation and compliance with recommended services, and provide insight on the benefits of various treatments.  This approach provides an opportunity to identify disparities in utilization of services and gain an understanding of contributing factors. Findings will contribute to the development of evidence-based guidelines for ASD interventions.  Understanding what works and for whom will allow KP to create more effective treatment recommendations and communication strategies.  Insights about health care experiences among Latino and African American families affected by ASD will aid in the development of targeted strategies to improve outcomes in these groups.  Finally, the study will help establish procedures and refine tools for assessing ASD intervention outcomes in the future.

Funder: Kaiser Permanente, TPMG Delivery Science Projects ProgramPrincipal
Investigator: Lisa Croen, PhD

Monitoring of Early Childhood Autism 
The Monitoring of Early Childhood Autism (MECA) project is a collaborative surveillance program to determine the prevalence of autism spectrum disorders (ASDs) in children less than 4 years of age. The study also aims to improve early identification of ASDs and provide useful data for planning ASD services.  The MECA project also provides a unique opportunity to collaborate with community partners in Santa Clara County to conduct autism screening and surveillance among very young children.

Funder:  Centers for Disease Control (CDC)
Collaborators: Kaiser Permanente Division of Research; California Department of Public Health (CDPH)
Principal investigator: Gayle Windham, PhD, CDPH
Site Principal Investigator: Lisa Croen, PhD

Partnership for Research and Dissemination of Evidence-Based Medicine in Autism
Given the complexity of and technical language typically used to convey scientific research findings, there is an urgent need to ensure that such information on autism spectrum disorders is communicated in a format that is understandable to those beyond the research community. We propose to translate and develop evidence-based medicine (EBM) health information into dramatic videos.  We will employ novel methods of adaption and innovative mechanisms through technology-based and social networking dissemination channels to create highly interactive and emotionally engaging documentary vignettes that can be rapidly and easily downloaded from an internet website.   Dissemination will target important audiences of clinicians, parents and teachers including members and providers in the Kaiser Permanente Northern California health system.

Funder: Agency for Healthcare Research and Quality (AHRQ)
Principal Investigator Mark Harris, University of Southern California
Site Principal Investigator: Lisa Croen, PhD

Prenatal PBDE Exposure and ASD-related Developmental Outcomes in the EARLI Cohort
This project will estimate and characterize risk for autism via PBDEs using data from the EARLI (Early Autism Longitudinal Risk Investigation) study, a multi-site prospective enriched-risk pregnancy cohort. EARLI has obtained prospective biological, observational, and questionnaire data on exposures and maternal characteristics during pregnancy, as well as risk factor information and longitudinal neurodevelopmental data on infant siblings.  Specific research questions based on 210 EARLI families include: 1) Is prenatal PBDE exposure associated with ASD-related neurodevelopmental outcomes; 2) Is any association between PBDE and ASD-related outcomes mediated by prenatal maternal thyroid hormone and/or prenatal maternal or offspring DNAm.

Funder: AutismSpeaks
Collaborators: Drexel University; Kaiser Permanente Northern California, Division of Research; Johns Hopkins University/Kennedy Krieger Institute; and University of California at Davis/MIND Institute.
Network Principal Investigator: Craig Newschaffer, PhD, Drexel University
Site Principal Investigator: Lisa Croen, PhD

Short Inter-Pregnancy Interval and Risk of Autism Spectrum Disorders
The objective of this study is to further investigate whether short inter-pregnancy intervals are associated with ASD by utilizing the rich data resources in Kaiser Permanente which will allow us to look into data that were not available in a previous reported study. The study cohort will be matched to the California Department of Developmental Services databases to identify additional ASD cases that may not exist in KPNC databases. Inter-pregnancy interval will be ascertained by matching the study cohort to the California birth certificate files to identify siblings. Additional information, such as parental demographic and clinical characteristics, will be obtained from KP databases as well as birth certificates. Results from the study will shed light on the possible association between short inter-pregnancy interval and ASD and may lead to recommendations for preventative measures for autism.

Funder: Kaiser Permanente Community Benefits Program
Principal Investigator: Lisa Croen, PhD

Study to Explore Early Development 
The Study to Explore Early Development (SEED) is a national study investigating the genetic and environmental factors that might put children at risk for autism spectrum disorders (ASDs) and other developmental disabilities.  Approximately 2,700 children between the ages of 2 and 5, and their families, are being invited to participate in research at six locations across the country including California, Colorado, Georgia, Maryland, North Carolina, and Pennsylvania. In California, SEED is being carried out in Alameda and Santa Clara Counties by Kaiser Permanente Northern California (KPNC) and the California Department of Public Health.  The study is open to both Kaiser Permanente members and non-members who live in the area.  For information about the SEED Study at Kaiser Permanente, click here. For information about the national SEED Study, click here.

Funder: Centers for Disease Control and Prevention (CDC)
Collaborators:  The Kaiser Permanente Division of Research;  the Colorado Department of Public Health and Environment; Johns Hopkins University in Maryland; University of North Carolina at Chapel Hill; and the University of Pennsylvania. The CDC is also participating in the study, and will include children and their parents from the metropolitan Atlanta area.
Site Principal Investigator: Lisa Croen, PhD