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The 2011 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research - January 18, 2011

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Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?

  • What infrastructure systems need to be supported, strengthened, or built to support this plan?
  • How can we ensure that resources and data are shared to support the scientific research process?
  • How can we ensure that findings are communicated to the public in a responsible and timely manner?
  • How can we improve autism surveillance efforts?

What Do We Know, and What Do We Need?

Current infrastructure may be insufficient to adequately support the research programs outlined in this plan. Additional investment in infrastructure is necessary to collect and share data among researchers, to encourage and enable individuals with ASD and their families to participate in research, and to improve the speed with which findings are disseminated and the extent to which findings are translated into practice and policy.

Data Sharing

In 2006, the National Institutes of Health (NIH) launched the National Database for Autism Research (NDAR) to improve sample sizes and enable researchers to share data for increased analyses. The NIH-supported national Autism Centers of Excellence (ACE), as well as the grants funded under the "Research to Address the Heterogeneity in Autism Spectrum Disorders" request for applications as part of the American Recovery and Reinvestment Act (ARRA), receive funding contingent upon acceptable plans and means for data sharing. Incentives are needed, however, to encourage data submission by other researchers. It will also be necessary to link other significant ASD databases with NDAR. In addition, databases that collect information and coordinate recruitment of people with ASD and their families to participate in research studies need to be enhanced and expanded. Programs to support contribution of data for recruitment, health care, education, social services, and administrative databases, like the Interactive Autism Network (IAN) This link exits the Interagency Autism Coordinating Committee Web site, collaboratively supported at the Kennedy Krieger Institute This link exits the Interagency Autism Coordinating Committee Web site by Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site, the Simons Foundation This link exits the Interagency Autism Coordinating Committee Web site, and NIH, should be encouraged. Collecting information about people with ASD will facilitate the study of whether early diagnosis, entry to services, and type of intervention affects the course of ASD over time. Multiple data sources from existing research or service systems (e.g., education, Medicaid) currently operate in isolation. In compiling and sharing data from existing data sources, researchers need to address data standardization as well as important privacy and ethical issues. Methods for merging such databases and linking investigator-recruited samples to these merged databases have been used in other populations and in specific locales with success and need to be further developed.

Biobanking

Many in the field have highlighted the need to establish nationally coordinated strategies for the collection and preservation of postmortem tissue from people both with and without ASD. The existing brain and tissue bank resources must be expanded to meet the high and continuously increasing demand for postmortem tissue by scientific investigators. More well-preserved brains are needed from people at various stages of development, and particularly from those with few co-occurring disorders. Additional matched controls are needed as well to supplement the limited supply in existing repositories.

In addition, it will be necessary to develop methods, standards, and protocols for collecting and storing other biological specimens, such as blood and urine, which might be used to study biological differences or signatures, and skin fibroblasts for creation of pluripotent stem cells.

Surveillance

Autism surveillance provides important estimates on the number of children affected with ASD and helps describe the characteristics of the people with autism spectrum disorders in the general population. Surveillance must be sustained over a period of many years in order to track trends in prevalence estimates over time and is an essential building block for population-based research, providing clues about potential risk factors that warrant further study. Surveillance provides important data regarding early identification of children with autism and informs education and health systems of areas in which programs can be modified to improve early identification and intervention. Surveillance data also provide critically important information for communities to use when planning for services.

In 2007, CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network published the first and most comprehensive summary of autism prevalence estimates in the United States (CDC, 2007). These data showed that between 1 in 100 to 1 in 300 (with an average of 1 in 150 children) were identified with ASD. In October 2009, investigators from HRSA and CDC reported that ASD occurs in an estimated 1.1% of children 3 to 17 years old, based on parent report during the National Survey of Children's Health (NSCH), This link exits the Interagency Autism Coordinating Committee Web site sponsored by HRSA (Kogan et al., 2009). Updated estimates from CDC's ADDM Network, published in December 2009, confirmed that approximately 1% of children were identified with an ASD (between 1 in 80 to 1 in 240 children, with an average of 1 in 110) (CDC, 2009). There was an increase of 57% in identified ASD prevalence from 2002 to 2006 in multiple areas of the United States. While these data provide important information for service planning and begin to help us understand that the increases are not fully accounted for by improved identification, many questions related to the multiple causes of ASD increases remain.

There are a number of areas in which prevalence studies could be improved, including the continued estimation and evaluation of prevalence in the same population over time; assessment of ASD prevalence in the context of other neurodevelopmental disorders; further analyses of existing datasets to examine the multiple identification and potential risk factors as they vary by prevalence; collection of data beyond core ASD symptoms, including genetic data and co-occurring medical, dental, and behavioral conditions; and expansion of studies across ages. Supporting international autism surveillance activities, prevalence estimates, and epidemiologic research will also be important, in order to compare prevalence estimates and epidemiologic characteristics across countries.

Communication and Dissemination

Research data regarding autism is now being published at a rapid rate. It is critical that new findings are communicated promptly and appropriately to the public so that research findings can be better translated into practice as appropriate. Effective translation is important so that new findings can be utilized to improve risk assessment and implementation of individualized interventions to reduce the disabling symptoms and promote a positive developmental trajectory as early as possible. Additional attention needs to be paid to improving the communication channels between scientists, practitioners, people with ASD, and their families.

There is also need to build a system for rapid replication of studies concerning key findings. In addition, there is still not agreement about meaningful subtypes or about how to individualize treatment. As more professionals become involved in autism research, there is a need for organized input from established scientists to provide guidance and expertise.

In addition, it will be necessary to identify and address the wide range of ethical and clinical issues related to the diagnosis, assessment, and communication of genetic, environmental, and clinical risk for autism.

Research Workforce Development

In order to accomplish the necessary research in the field of autism, it will also be important to develop an adequate scientific workforce. While much autism research is already under way, there are several areas of research that are new and growing, including interdisciplinary research, where additional researchers will be needed in the coming years. The continued expansion and development of this research workforce will be essential to fulfilling the goals laid out in the IACC Strategic Plan.

2011 Addendum To Question 7: What Other Infrastructure and Surveillance Needs Must Be Met?

What Is New in This Research Area, and What Have We Learned This Past Year?

Data sharing

This year, the Autism Informatics Consortium (AIC), collaboratively supported by NIH, Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site, and the Simons Foundation This link exits the Interagency Autism Coordinating Committee Web site, was launched with the goal of accelerating scientific discovery by making informatics tools and resources more useful to, and usable by, autism researchers. The consortium is charged with identifying information technology solutions, harmonizing major informatics frameworks, and developing standards in the field for working with research data. The consortium is composed of representatives from both public and private institutions that are responsible for the development of major autism informatics tools and resources. Current members include the Autism Genetic Resource Exchange (AGRE) This link exits the Interagency Autism Coordinating Committee Web site, supported by Autism Speaks; the Interactive Autism Network (IAN) This link exits the Interagency Autism Coordinating Committee Web site at the Kennedy Krieger Institute This link exits the Interagency Autism Coordinating Committee Web site, supported by NIH, Autism Speaks, and the Simons Foundation; the Simons Foundation; Prometheus Research This link exits the Interagency Autism Coordinating Committee Web site, supported by the Simons Foundation Autism Research Initiative (SFARI) This link exits the Interagency Autism Coordinating Committee Web site; and the National Database for Autism Research (NDAR), supported by NIH. The AIC held its first workshop on August 26-27, 2010, at the National Institute of Mental Health (NIMH)/NIH offices in Rockville, MD. In attendance were representatives from 12 major research institutions. The objective of the meeting was to explore short-term (one to two years) and intermediate term (two to five years) priorities for increasing the utility and harmonization of major autism research informatics resources, identify ways to best pursue those priorities, and determine ways to measure progress toward achieving them.

Considerable progress has been made on the input of data to NDAR. Data are now available to researchers from more than 10,000 participants enrolled in studies of ASD. Access to the data is through a NDAR-supported webportal that allows queries from multiple databases simultaneously.

Biobanking

There has been considerable progress in the growth of a number of major biobank repositories.

The Autism Treatment Network (ATN) This link exits the Interagency Autism Coordinating Committee Web site, a program Autism Speaks funded in part through grants from HRSA and NIMH, is a collaboration among 14 academic medical centers that provide clinical services for children with ASD and collect and store common, extensive phenotypic data on children with autism in a central patient registry. The NIMH is supporting ATN efforts to collect DNA, plasma, and urine from 4 of the 14 sites as a beginning step toward establishing a comprehensive biorepository for the ATN. One goal of establishing the repository is to provide a platform for conducting comparative effectiveness research that can utilize biomarkers to predict response to treatments.

The Simons Simplex Collection This link exits the Interagency Autism Coordinating Committee Web site, supported by the Simons Foundation Autism Research Initiative (SFARI), was established to develop a permanent research repository of detailed phenotypic and genetic information on 3,000 simplex families with a child with an ASD. Nearly 2,000 families had been enrolled as of November 2010, with the goal of completing enrollment by the summer of 2011 (Fischbach & Lord, 2010).

The Autism Genome Project (AGP) This link exits the Interagency Autism Coordinating Committee Web site, a collaborative effort between Autism Speaks and several other international partners, including the Health Research Board of Ireland This link exits the Interagency Autism Coordinating Committee Web site, Genome Canada, This link exits the Interagency Autism Coordinating Committee Web site the United Kingdom's Medical Research Council (MRC) This link exits the Interagency Autism Coordinating Committee Web site and the Hilibrand Foundation This link exits the Interagency Autism Coordinating Committee Web site, is focusing on identifying genes associated with the risk for ASD. The AGP consists of 120 scientists from more than 60 institutions representing 11 countries. The biobank now contains 23,101 total samples, including 5,814 probands (individuals who are the first member within their family identified as having an ASD).

The Autism Genetic Resource Exchange (AGRE) This link exits the Interagency Autism Coordinating Committee Web site is a program of Autism Speaks to advance genetic research in autism spectrum disorders. Genetic biomaterials and clinical data are obtained from multiplex families (i.e., families with more than one member diagnosed with an ASD). The biological samples, along with the accompanying clinical data, are made available to AGRE-approved researchers. There are more than 10,000 samples in the AGRE repository on individuals with ASD and their family members (including 4,240 probands). About half of the samples in AGRE are also represented in the AGP.

Through the Center for Collaborative Genetic Studies on Mental Disorders This link exits the Interagency Autism Coordinating Committee Web site, the NIMH/NIH supports the NIMH Genetics Repository, a collection of DNA, cell culture lines, and clinical data from individuals with complex mental disorders, including ASD. From these materials, researchers can discover gene variants, epigenetic signals, and biomarkers that identify disease risk, aid in diagnosis, and predict response to treatments. Beginning in 2008 and continuing through 2013, the NIMH is sponsoring the Human Genetics Initiative This link exits the Interagency Autism Coordinating Committee Web site to expand the number of samples in the NIMH Genetics Repository. The current biobank collection consists of 589 trios (biomaterials from an ASD-affected individual and both parents), 513 partial trios with biomaterials from one parent, and 972 independent cases. In addition, more than 1,400 ASD samples are being processed and are expected to be available shortly. The Human Genetics Initiative works collaboratively with AGRE and offers access to much of the AGRE collection, as well as samples from the NIMH Genetics Repository. In the coming years, NIMH will focus on increasing the number of samples, particularly from parents and first-degree relatives, and linking the ASD-relevant data with the National Database for Autism Research.

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)/NIH supports the Brain and Tissue Bank for Developmental Disorders This link exits the Interagency Autism Coordinating Committee Web site program, which collects, stores, and distributes brain and other tissues for biomedical research. The bank was expanded in 2009 and is currently funded through 2014. To date, researchers can request tissue samples donated by about 60 ASD individuals, as well as tissues from autism-related disorders like fragile X (20 cases), tuberous sclerosis complex (33 cases), neurofibromatosis (18 cases), and Rett syndrome (10 cases). The use of this tissue has resulted in 77 scientific papers on autism and 42 papers on the other disorders. While efforts to recruit donors have had a positive impact, there is still a great unmet need for ASD tissue collection and distribution across the ASD research community.

The Autism Tissue Program (ATP) This link exits the Interagency Autism Coordinating Committee Web site, a clinical program of Autism Speaks, is dedicated to supporting scientists worldwide in their efforts to understand autism, autism-related disorders and the human brain. The ATP makes postmortem brain tissue available to as many qualified scientists as possible to advance research on autism and other related neurological conditions. Toward that end, the ATP has acquired 150 whole brain donations from individuals with autism, autism-related disorders, their relatives, and controls, while making all tissue and comprehensive phenotype data available to the research community.

Surveillance

One area that has progressed is the establishment of systems to identify and monitor the prevalence of ASD in the United States. The CDC's ADDM Network (CDC, 2009) and a report from the HRSA-sponsored National Survey of Children's Health This link exits the Interagency Autism Coordinating Committee Web site (Kogan et al., 2009) reported ASD prevalence of around 1% of children. Of great concern was the average increase of 57% from 2002 to 2006 in 10 areas of the United States covered by the ADDM Network (CDC, 2009). While some of the increase was attributed to improved identification of particular subgroups, such as Hispanic children and children without cognitive impairment, a true increase in risk is also possible (CDC, 2009). Several other recent studies have also indicated that multiple identification factors contribute to, but do not fully explain, the rising ASD prevalence (Hertz-Picciotto & Delwiche, 2009; Saemundsen et al., 2010; King & Bearman, 2009; Rice et al., 2010; van Meter et al., 2010; Mazumdar et al., 2010). Concerted efforts are now needed to evaluate the reasons behind these changes.

Information and Communication Dissemination

Of particular importance is the rapid translation of research findings as they apply to intervention and the dissemination to families and practitioners in the community in a way that is easy to access and understand. There have been several reviews of intervention quality and effectiveness (Young et al., 2010 This link exits the Interagency Autism Coordinating Committee Web site (PDF – 2.44 MB); Lang et al., 2010), and several States have formed task forces or councils for ASD and other developmental disability (DD) services and have compiled service plans based on the current state of knowledge (Summary of the Massachusetts Act Early State Team Autism Summit This link exits the Interagency Autism Coordinating Committee Web site).

In October 2010, the Administration on Developmental Disabilities (ADD)/Administration for Children and Families (ACF) awarded The Arc of the United States This link exits the Interagency Autism Coordinating Committee Web site $1.87 million for fiscal year 2010 to establish a National Resource and Information Center This link exits the Interagency Autism Coordinating Committee Web site on ASD and other developmental disabilities. The Autism NOW Project This link exits the Interagency Autism Coordinating Committee Web site is collaborating with several partners, including the Autistic Self Advocacy Network (ASAN) This link exits the Interagency Autism Coordinating Committee Web site, the Autism Society This link exits the Interagency Autism Coordinating Committee Web site, and several ADD Network entities to engage and leverage a national network of disability, aging, and family organizations. The center will provide high-quality resources and information related to community-based services that support independent living and self-determination, treatment protocols that promote community-based experiences (e.g., education, employment, recreation, transportation, early intervention, and child care), and evidence-based interventions. The intended audience for the center includes people with ASD, family members, service providers, researchers, and the general public. The center will also host a parent-to-parent call-in center for families addressing issues relating to autism and other developmental disabilities.

Research Workforce Development

In 2009, NIH supported 60 trainees (graduate students and postdoctoral fellows) through individual NIH training and fellowship grants to study autism. These are in addition to a large number of trainees supported by NIH in 2009 on more than 200 traditionally funded NIH research project grants focused on autism, as well as more than 100 new autism-related research projects funded under the American Recovery and Reinvestment Act (ARRA). Private research organizations such as Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site and the Autism Science Foundation This link exits the Interagency Autism Coordinating Committee Web site also supported several research training awards in 2009 and 2010.

What Gap Areas Have Emerged Since Last Year?

Data sharing

The Autism Informatics Consortium (AIC) identified several short-term and long-term priorities for increasing the utility and harmonization of major autism research informatics resources, identifying ways to best pursue those priorities, and determining ways to measure progress toward achieving them. Examples of gap areas identified include the need for improved options for data federation, query interfaces, and languages; genetic visualization tools; file and data set management; data quality and validation rules and algorithms; data dictionaries and ontologies; standardizing globally unique identifier (GUID) usage; procedures for maintaining phenotype resources with associated biospecimens (i.e., imaging and genetics); defining a core (clinical) phenotype battery; working with publishers of copyrighted assessments; and addressing concerns about intellectual property.

During 2010, the Affordable Care Act was passed with an unprecedented call to transition record keeping to electronic health records (EHRs). The development of EHRs provides an opportunity to consider the use of EHRs for data collection and analyses related to the service needs of people with ASD. Of course, important privacy issues need to be considered and addressed before these types of data could be more routinely collected and utilized as part of EHRs.

Biobanking

In the absence of biological markers, current approaches for stratification of individuals with ASD into clinically meaningful subgroups have relied on behavioral characteristics. However, the variability of behavioral, medical, and developmental concerns that affect individuals with ASD has made it extremely difficult to predict which treatments work best for which individuals. The integration of biologic information into phenotype selection algorithms can help to guide the development and evaluation of more targeted and effective therapeutics and significantly improve the prediction of a therapeutic response. To this end, there is a need for the establishment of a robust network of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., genotype), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments. Currently, there is a need for high-throughput screening tools to quickly evaluate gene-environment interactions relevant to ASD (e.g., induced pluripotent stem cells). Lack of progress in this area has made identification of potential exposures of interest difficult and driven by anecdotal evidence.

Surveillance

Moving forward, there is a need to maintain the sites so that early prevalence and population characteristics can be compared over time. A particular challenge is keeping consistency in the number of sites with four-year funding cycles and different numbers of sites funded based on availability of funds. In addition, completeness of data collection is hindered in some sites by the lack of access to educational records for surveillance purposes. Despite these challenges, the CDC's ADDM Network has maintained a core of approximately 12 sites with multiple prevalence years completed. There is now a need to go further to understand how multiple identification and potential risk factors have influenced the increasing estimates of ASD prevalence. Further analyses of existing datasets are needed to examine any relationship between changes in ASD prevalence and changes in potential risk factors in the population. Surveillance cohorts also provide the opportunity for communities and policy makers to use these data for resource allocation in addition to characterizing population-based identification patterns and gaps. Surveillance data can also be used to better characterize the population of children identified with an ASD by select characteristics, such as level of cognitive impairment, subtypes as diagnosed by community professionals, diagnostic features, associated conditions, and degree of impairment by clinician rating. Expansion of surveillance efforts are needed to improve early identification and to understand functioning and outcome of individuals with an ASD as adults.

Communication and Information Dissemination

There have been several reviews of intervention quality and effectiveness, and several States or agencies (e.g., Governor's councils, task forces and the Department of Education) have developed plans for ASD and other DD services based on the current state of knowledge. This information and these plans should be easily accessible to other communities. Right now, there are many public and private resources that work to compile services and supports information; however, finding this information can be challenging.

Focusing more on the issue of translating research into practice, the IACC Services Workshop on November 8, 2010, called for research that is meaningful to teachers and family members and conducted in non-clinical settings to better simulate the settings in which children with ASD are being served. This will help to ensure that students with ASD receive high-quality special education services.

The Agency for Healthcare Research and Quality (AHRQ) has ongoing efforts related to translation of research into practice. This work includes identifying sustainable and reproducible strategies (1) to help accelerate the impact of health services research on direct patient care and (2) to improve the outcomes, quality, effectiveness, efficiency, and/or cost-effectiveness of care through partnerships between health care organizations and researchers. To further address the challenges around dissemination of research findings, AHRQ developed a "knowledge transfer framework," which encompasses three major stages: knowledge creation and distillation; diffusion and dissemination; and end user adoption, implementation, and institutionalization. While this work is not specific to autism, it may provide a useful framework to guide autism research translation efforts.

Research Workforce Development

Ongoing investment in developing research expertise and facilitating careers in autism research is needed, especially in the emerging areas of health services research, translational research, and international collaborative studies. In addition, continued efforts to enhance diversity in the research workforce are needed, including efforts to include people with disabilities and in particular individuals with ASD. Funds from the American Recovery and Reinvestment Act (ARRA) increased investments in ASD research, which contributed to recent expansion of the research workforce (particularly the number of graduate and postdoctoral students working in the field). With ARRA funding ending in 2011 and the potentially constrained fiscal climate anticipated for fiscal years 2011 and 2012, there is growing concern about the ability for both Federal and private entities to support recent gains in the research workforce.

Aspirational Goal: Develop And Support Infrastructure And Surveillance Systems That Advance The Speed, Efficacy, And Dissemination Of Autism Research.

Short- and Long-Term Objectives

Note: Dates that appear next to the objectives indicate the year that the objective was added to the Strategic Plan. If the objective was revised in subsequent editions of the Plan, the revision date is also noted.

2009 A. Conduct a needs assessment to determine how to merge or link administrative and/or surveillance databases that allow for tracking the involvement of people living with ASD in health care, education, and social services by 2009. IACC Recommended Budget: $520,000 over 1 year.
2009
Revised in 2011
B. Conduct an annual "State of the States" assessment of existing State programs and supports for people and families living with ASD by 2011. IACC Recommended Budget: $300,000 each year.
2009 C. Develop and have available to the research community means by which to merge or link databases that allow for tracking the involvement of people in ASD research by 2010. IACC Recommended Budget: $1,300,000 over 2 years.
2009 D. Establish and maintain an international network of biobanks for the collection of brain tissue, fibroblasts for pluripotent stem cells, and other tissue or biological material, by acquisition sites that use standardized protocols for phenotyping, collection, and regulated distribution of limited samples by 2011. (Revised 2011)
  • This includes support for post-processing of tissue, such as genotyping, RNA expression profiling, and MRI.

  • Protocols should be put into place to expand the capacities of ongoing large-scale children's studies to collect and store additional biomaterials, including newborn bloodspots, promoting detection of biological signatures.

  • Support should also be provided to develop an international web-based digital brain atlas that would provide high-resolution 3-D images and quantitative anatomical data from tissue of patients with ASD and disease controls across the lifespan, which could serve as an online resource for quantitative morphological studies, by 2014.

IACC Recommended Budget: $82,700,000 over 5 years.

2010 E. Begin development of a web-based toolbox to assist researchers in effectively and responsibly disseminating their findings to the community, including people with ASD, their families, and health practitioners, by 2011. IACC Recommended Budget: $400,000 over 2 years.
2010 F. Create funding mechanisms that encourage rapid replication studies of novel or critical findings by 2011.
2010 G. Develop a web-based tool that provides population estimates of ASD prevalence for States based on the most recent prevalence range and average identified by the ADDM Network by 2012. IACC Recommended Budget: $200,000 over 2 years.
2010 H. Create mechanisms to specifically support the contribution of data from 90% of newly initiated projects to the National Database for Autism Research (NDAR), and link NDAR with other existing data resources, by 2012. IACC Recommended Budget: $6,800,000 over 2 years.
2010 I. Supplement existing ADDM Network sites to use population-based surveillance data to conduct at least five hypothesis-driven analyses evaluating factors that may contribute to changes in ASD prevalence by 2012. IACC Recommended Budget: $660,000 over 2 years.
2010 J. Develop the personnel and technical infrastructure to assist States, territories, and other countries that request assistance describing and investigating potential changes in the prevalence of ASD and other developmental disabilities by 2013. IACC Recommended Budget: $1,650,000 over 3 years.
2010 K. Encourage programs and funding mechanisms that expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field by 2013. IACC Recommended Budget: $5,000,000 over 3 years.
2010
Revised in 2011
L. Expand the number of ADDM sites in order to conduct ASD surveillance in children and adults; conduct complementary direct screening to inform completeness of ongoing surveillance; and expand efforts to include autism subtypes by 2015. IACC Recommended Budget: $16,200,000 over 5 years.
2010 M. Support 10 "Promising Practices" papers that describe innovative and successful services and supports being implemented in communities that benefit the full spectrum of people with ASD, which can be replicated in other communities, by 2015. IACC Recommended Budget: $75,000 over 5 years.
2011 N. Enhance networks of clinical research sites offering clinical care in real-world settings that can collect and coordinate standardized and comprehensive diagnostic, biological (e.g., DNA, plasma, fibroblasts, urine), medical, and treatment history data that would provide a platform for conducting comparative effectiveness research and clinical trials of novel autism treatments by 2012. IACC Recommended Budget: $1,850,000 over 1 year.
2011 O. Create an information resource for ASD researchers (e.g., PhenX Project This link exits the Interagency Autism Coordinating Committee Web site) to share information to facilitate data sharing and standardization of methods across projects by 2013.
  • This includes common protocols, instruments, designs, and other procedural documents and should include updates on new technology and links to information on how to acquire and utilize technology in development.

  • This can serve as a bidirectional information reference, with autism research driving the development of new resources and technologies, including new model systems, screening tools, and analytic techniques.

IACC Recommended Budget: $2,000,000 over 2 years.

2011 P. Provide resources to centers or facilities that develop promising vertebrate and invertebrate model systems, and make these models more easily available or expand the utility of current model systems, and support new approaches to develop high-throughput screening technologies to evaluate the validity of model systems by 2013. IACC Recommended Budget: $1,100,000 over 2 years.

Research Resources

Below is a list of currently available resources for conducting ASD research. It includes government and nongovernment resources spanning topics such as genetics, bioinformatics, brain and tissue samples, and animal resources, as well as resources related to surveillance, prevalence, and services.

Government Resources

ADDM (Autism and Developmental Disabilities Monitoring) Network
A surveillance network that provides data about ASD prevalence and describes the population of children with ASD. Supported by CDC.

AutismNOW: The National Autism Resource and Information Center
A center that provides access to resources and information on community-based services and interventions for people with ASD and their families, through a national dissemination network, regional events, training and technical assistance, and the web. Supported by the Administration on Developmental Disabilities/Administration for Children and Families.

CADDRE (Centers for Autism and Developmental Disabilities Research and Epidemiology)
Regional centers of excellence for ASD and other developmental disabilities, which are currently conducting the largest U.S. study of ASD risk factors. Supported by CDC.

National Children's Study
A population-based study of environmental influences on child health and development that could be used to investigate the relationship between genetic and environmental risk markers and ASD diagnosis. Supported by NIH.

NDAR (National Database for Autism Research)
A secure bioinformatics platform for scientific collaboration and data sharing between ASD investigators. Supported by NIH.

NDAR Data Definition
Provides data definitions of ASD research terminology. Supported by NIH.

NICHD Brain and Tissue Bank This link exits the Interagency Autism Coordinating Committee Web site
A brain tissue repository to support and enhance the acquisition and distribution of tissue samples from deceased individuals diagnosed with intellectual and developmental disabilities for use in research studies. Supported by NIH.

NIF (Neuroscience Information Framework) This link exits the Interagency Autism Coordinating Committee Web site
A dynamic inventory of web-based neuroscience resources that enables discovery and worldwide access to these resources through an open source, networked environment. The NeuroLex This link exits the Interagency Autism Coordinating Committee Web site project, within NIF, is a dynamic lexicon to improve communication among neuroscientists about their data by standardizing neuroscience terminology. Supported by NIH.

NIH Blueprint Non-Human Primate Atlas This link exits the Interagency Autism Coordinating Committee Web site
An atlas mapping the expression of particular genes to specific neuroanatomical locations across several time points in development in the rhesus monkey. Supported by NIH.

NIH Pediatric MRI Data Repository This link exits the Interagency Autism Coordinating Committee Web site
A multi-site longitudinal study using technologies (anatomical magnetic resonance imaging [MRI], diffusion tensor imaging [DTI], and magnetic resonance spectroscopy [MRS]) to map pediatric brain development. Supported by NIH.

NIMH Center for Collaborative Genetic Studies of Mental Disorders This link exits the Interagency Autism Coordinating Committee Web site
A repository of biospecimens from individuals with mental illnesses such as schizophrenia, bipolar disorder, autism spectrum disorders, depression, and obsessive-compulsive disorders. Supported by NIH.

NIMH Transcriptional Atlas of Human Brain Development This link exits the Interagency Autism Coordinating Committee Web site
A foundational resource created using funds from the American Recovery and Reinvestment Act (ARRA) for studying transcriptional mechanisms involved in human brain development. Supported by NIH.

NITRC (Neuroimaging Informatics Tools and Resources Clearinghouse) This link exits the Interagency Autism Coordinating Committee Web site
A neuroimaging tools repository, NITRC facilitates finding and comparing neuroimaging resources for functional and structural neuroimaging analyses. Supported by NIH.


Non-Government Resources

AGRE (Autism Genetic Resource Exchange) This link exits the Interagency Autism Coordinating Committee Web site
A repository for biomaterials and associated phenotype and genotype information from more than 1,000 individuals with an ASD diagnosis and their families. Supported by Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site.

ALLEN Human Brain Atlas This link exits the Interagency Autism Coordinating Committee Web site
A unique multi-modal atlas of the human brain that integrates anatomic data (MRI, DTI, histology) and gene expression data (microarray, in situ hybridization), coupled with a suite of visualization and mining tools, to create an open public resource for brain researchers and other scientists across a wide range of specialties, including autism. Maintained by the Allen Institute for Brain Science This link exits the Interagency Autism Coordinating Committee Web site.

Autism Genome Project This link exits the Interagency Autism Coordinating Committee Web site
A study to find the genes associated with inherited risk for autism. Supported by Autism Speaks and other partners, including the Health Research Board of Ireland, This link exits the Interagency Autism Coordinating Committee Web site Genome Canada, This link exits the Interagency Autism Coordinating Committee Web site the United Kingdom's Medical Research Council (MRC), This link exits the Interagency Autism Coordinating Committee Web site and the Hilibrand Foundation This link exits the Interagency Autism Coordinating Committee Web site.

Autism Induced Pluripotent Stem Cell (iPSC) Biorepository (ASCB) This link exits the Interagency Autism Coordinating Committee Web site
A biorepository of fibroblast and iPSC lines cultured from patients with idiopathic autism as well as patients with FMR1 gene mutations. Maintained by the National Human Neural Stem Cell Resource This link exits the Interagency Autism Coordinating Committee Web site at the Children's Hospital of Orange County and fully supported by the NIH.

Autism Tissue Program This link exits the Interagency Autism Coordinating Committee Web site
An ASD brain tissue repository. Supported by Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site.

Autism Treatment Network This link exits the Interagency Autism Coordinating Committee Web site
A network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. A program of Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site funded in part through grants from HRSA and NIH.

Coriell Institute's Autism Research Resource This link exits the Interagency Autism Coordinating Committee Web site
A biobank of cell lines and DNA samples from autistic individuals and family members with corresponding detailed clinical diagnoses. The biobank is maintained and fully supported by Coriell Institute for Medical Research This link exits the Interagency Autism Coordinating Committee Web site, in collaboration with the University of Medicine and Dentistry, Robert Wood Johnson Medical School This link exits the Interagency Autism Coordinating Committee Web site, New Jersey.

High Risk Baby Siblings Research Consortium This link exits the Interagency Autism Coordinating Committee Web site
A consortium studying the infant siblings of children with ASD in order to identify early behavioral and biomedical markers of the disorder. Supported by Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site and NIH.

IAN (Interactive Autism Network) This link exits the Interagency Autism Coordinating Committee Web site
An online registry of more than 35,000 people who have or are related to those with ASD. Collaboratively supported at the Kennedy Krieger Institute This link exits the Interagency Autism Coordinating Committee Web site by Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site, the Simons Foundation This link exits the Interagency Autism Coordinating Committee Web site, and NIH.

ISAAC (Internet System for Assessing Autistic Children) This link exits the Interagency Autism Coordinating Committee Web site
A web-based application for administering and managing health research projects/studies and the associated data. Supported by Autism Speaks This link exits the Interagency Autism Coordinating Committee Web site.

REDCap (Research Electronic Data Capture) This link exits the Interagency Autism Coordinating Committee Web site
Two secure, web-based applications (REDCap and REDCap Survey) designed to support data capture for research studies. Maintained by the REDCap Consortium This link exits the Interagency Autism Coordinating Committee Web site, comprised of 194 active institutional partners.

SFARI Gene This link exits the Interagency Autism Coordinating Committee Web site / AutDB (Autism Database) This link exits the Interagency Autism Coordinating Committee Web site
A publicly available webportal for ongoing collection, manual annotation, and visualization of genes associated with autism from the published literature. SFARI Gene is licensed by the Simons Foundation This link exits the Interagency Autism Coordinating Committee Web site from MindSpec This link exits the Interagency Autism Coordinating Committee Web site.

Simons Simplex Collection This link exits the Interagency Autism Coordinating Committee Web site
A repository of genetic samples and phenotypic data from families where parents without ASD give birth to a child with the disorder. Supported by the Simons Foundation Autism Research Initiative (SFARI) This link exits the Interagency Autism Coordinating Committee Web site.


Copyright Information
All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows.

Suggested Citation
Interagency Autism Coordinating Committee (IACC). 2011 IACC Strategic Plan for Autism Spectrum Disorder Research. January 2011. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/strategic-plan/2011/index.shtml.


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