Portfolio Analysis Report
IACC Autism Spectrum Disorder Research
2010
Appendix A: ASD Research Progress on 2011 IACC Strategic Plan Objectives
Data includes 2010 funding from Federal/private funders of ASD research and 2010 ARRA funding. |
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Current project and funding status for each question or objective is indicated within the table by colored "dots" next to the objective. Any objective colored green has greater than or equal to the recommended funding; any objective colored yellow has some degree of funding, but less than the recommended amount; while any objective colored red has no funding. |
New! |
Objectives labeled "New!" are either entirely new additions to the 2011 Strategic Plan or significantly modified objectives from the 2010 Strategic Plan. Objectives from the 2010 Strategic Plan that did not change or that have been slightly modified for clarification purposes in the 2011 Strategic Plan are unmarked. |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Question 1: When should I be concerned?
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan Objectives 1.S.A | Projects15 |
Funding$4,963,192 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 1.S.B | Projects11 |
Funding$2,443,557 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 1.S.C | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 1.S.D | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan ObjectivesNew! | Projects3 |
Funding$2,180,042 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 1.L.A | Projects45 |
Funding$13,270,045 |
Percent of Total ASD Funding3% |
2011 IACC Strategic Plan Objectives 1.L.B | Projects52 |
Funding$15,228,060 |
Percent of Total ASD Funding4% |
2011 IACC Strategic Plan Objectives 1.L.C | Projects22 |
Funding$3,893,622 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives | Projects18 |
Funding$3,643,562 (8%) |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan ObjectivesTotal Funding for Question 1 | Projects166 |
Funding$45,622,080 |
Percent of Total ASD Funding11% |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Question 2: How can I understand what is happening?
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan Objectives 2.S.A | Projects37 |
Funding$4,972,407 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 2.S.B | Projects5 |
Funding$1,096,678 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 2.S.C | Projects1 |
Funding$17,000 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 2.S.D | Projects57 |
Funding$13,162,905 |
Percent of Total ASD Funding3% |
2011 IACC Strategic Plan Objectives 2.S.E | Projects14 |
Funding$4,611,058 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 2.S.F | Projects2 |
Funding$401,595 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 2.S.G | Projects39 |
Funding$9,149,672 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan Objectives 2.L.A | Projects6 |
Funding$2,283,875 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 2.L.B | Projects2 |
Funding$450,271 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives | Projects246 |
Funding$55,114,888 |
Percent of Total ASD Funding13% |
2011 IACC Strategic Plan ObjectivesTotal Funding for Question 2 | Projects409 |
Funding$91,260,349 |
Percent of Total ASD Funding22% |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Question 3: What caused this to happen and can it be prevented?
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan Objectives 3.S.A | Projects14 |
Funding$16,688,932 |
Percent of Total ASD Funding4% |
2011 IACC Strategic Plan Objectives 3.S.B | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 3.S.C | Projects8 |
Funding$4,824,779 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 3.S.D | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 3.S.E | Projects10 |
Funding$1,162,679 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 3.S.F | Projects5 |
Funding$166,362 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan ObjectivesNew!
| Projects13 |
Funding$1,527,866 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects3 |
Funding$53,960 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects15 |
Funding$5,072,389 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects5 |
Funding$733,922 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 3.L.A | Projects2 |
Funding$2,971,093 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 3.L.B | Projects60 |
Funding$34,432,884 |
Percent of Total ASD Funding8% |
2011 IACC Strategic Plan Objectives 3.L.C | Projects10 |
Funding$820,320 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 3.L.D | Projects10 |
Funding$11,464,011 |
Percent of Total ASD Funding3% |
2011 IACC Strategic Plan Objectives | Projects7 |
Funding$1,312,450 (2%) |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesTotal Funding for Question 3 | Projects162 |
Funding$81,231,647 |
Percent of Total ASD Funding20% |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Question 4: Which treatments and interventions will help?
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan Objectives 4.S.A | Projects4 |
Funding$3,787,700 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 4.S.B | Projects92 |
Funding$23,229,501 |
Percent of Total ASD Funding6% |
2011 IACC Strategic Plan Objectives 4.S.C | Projects18 |
Funding$1,509,745 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 4.S.D | Projects18 |
Funding$10,306,148 |
Percent of Total ASD Funding3% |
2011 IACC Strategic Plan Objectives 4.S.E | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 4.S.F
| Projects30 |
Funding$7,575,212 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan Objectives
New!
| Projects11 |
Funding$1,907,721 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects2 |
Funding$225,877 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 4.L.A | Projects11 |
Funding$1,924,932 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 4.L.B | Projects3 |
Funding$307,349 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 4.L.C | Projects7 |
Funding$2,302,240 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan ObjectivesNew!
Outcome measures should include assessment of potential harm as a result of autism treatments, as well as positive outcomes. IACC Recommended Budget: $37,500,000 over 5 years. | Projects32 |
Funding$8,756,832 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan Objectives | Projects49 |
Funding$6,290,633 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan ObjectivesTotal Funding for Question 4 | Projects277 |
Funding$68,123,890 |
Percent of Total ASD Funding17% |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Question 5: Where can I turn for services?
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan Objectives 5.S.A | Projects9 |
Funding$2,061,834 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 5.S.B | Projects6 |
Funding$291,635 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 5.S.C | Projects15 |
Funding$4,225,315 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects3 |
Funding$159,135 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 5.L.A | Projects22 |
Funding$7,747,912 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan Objectives 5.L.B | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 5.L.C | Projects83 |
Funding$36,433,257 |
Percent of Total ASD Funding9% |
2011 IACC Strategic Plan ObjectivesNew! | Projects5 |
Funding$296,840 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesNew!
| Projects2 |
Funding$196,457 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives | Projects66 |
Funding$13,436,737 |
Percent of Total ASD Funding3% |
2011 IACC Strategic Plan ObjectivesTotal Funding for Question 5 | Projects211 |
Funding$64,849,122 |
Percent of Total ASD Funding16% |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Question 6: What does the future hold, particularly for adults?
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan Objectives 6.S.A | Projects2 |
Funding$283,837 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 6.S.B | Projects2 |
Funding$700,000 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 6.S.C | Projects1 |
Funding$28,000 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 6.S.D | Projects3 |
Funding$619,163 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 6.L.A | Projects18 |
Funding$2,285,071 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 6.L.B | Projects3 |
Funding$1,280,790 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 6.L.C
| Projects2 |
Funding$774,644 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 6.L.D | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives | Projects3 |
Funding$671,619 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesTotal Funding for Question 6 | Projects34 |
Funding$6,643,124 |
Percent of Total ASD Funding2% |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Question 7: What other infrastructure and surveillance needs must be met?
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan Objectives 7.A | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 7.B | Projects1 |
Funding$197,128 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 7.C | Projects5 |
Funding$2,785,368 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 7.D
| Projects6 |
Funding$7,814,918 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan Objectives 7.E | Projects1 |
Funding$390,134 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 7.F | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 7.G | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan Objectives 7.H | Projects3 |
Funding$2,453,253 |
Percent of Total ASD Funding1% |
2011 IACC Strategic Plan Objectives 7.I | Projects13 |
Funding$6,137,128 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan Objectives 7.J | Projects4 |
Funding$170,490 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 7.K | Projects34 |
Funding$7,358,427 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan Objectives 7.L | Projects8 |
Funding$1,429,602 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives 7.M | Projects0 |
Funding$0 |
Percent of Total ASD Funding0% |
2011 IACC Strategic Plan ObjectivesNew! | Projects3 |
Funding$6,662,790 |
Percent of Total ASD Funding2% |
2011 IACC Strategic Plan ObjectivesNew!
| Projects3 |
Funding$605,338 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan ObjectivesNew! | Projects1 |
Funding$1,588,780 |
Percent of Total ASD Funding<1% |
2011 IACC Strategic Plan Objectives | Projects26 |
Funding$13,253,709 |
Percent of Total ASD Funding3% |
2011 IACC Strategic Plan ObjectivesTotal Funding for Question 7 | Projects108 |
Funding$50,847,065 |
Percent of Total ASD Funding12% |
The percentages noted in parentheses in the "Projects" and "Funding" columns indicate the fraction of all projects or funding within that specific question, whereas the percentage in the "Percent of Total ASD Funding" column indicates the percent of the entire ASD research funding portfolio for 2010. Due to rounding, the percentages within a question may not equal exactly 100%.
Grand Total
2011 IACC Strategic Plan Objectives | Projects | Funding | Percent of Total ASD Funding |
---|---|---|---|
2011 IACC Strategic Plan ObjectivesTotal ASD Funding for 2010 | Projects1,367 |
Funding$408,577,276 |
Percent of Total ASD Funding100% |
Appendix B: Subcategory Definitions
Question 1: Diagnosis
Diagnostic and screening tools: This subcategory includes projects that are developing new autism diagnostic and screening tests, as well as those establishing the usefulness of new or revised assessments for autism symptoms. It also encompasses projects aimed at adapting clinical assessments into other languages for use in multi-lingual community settings and non-U.S. countries.
Early signs and biomarkers: Projects which use a variety of methods to search for signs of autism in very young children (generally under age 3) that could be used for diagnosis, such as eye-tracking, physiological measures, and autism-specific behavioral patterns are included in this subcategory. More examples include projects investigating metabolic measures, such as the levels of specific chemicals, hormones, or proteins in the blood that could be used as biomarkers of the disorder.
Intermediate phenotypes/Subgroups: Included in this subcategory are projects aimed at identifying distinct subgroups of people with autism, or those that share common morphological, physiological, or behavioral features. Projects in this subcategory use a variety of methods to identify and distinguish these groups.
Symptomology: These projects seek to define the broad range and severity of autism symptoms, including both biological and behavioral characteristics. Among these studies are some that examine how children and adults with autism vary in their development of social communication and language. Other projects seek to understand the emergence of problem behaviors and how neurocognitive impairments can contribute to symptom development and phenotypic variability in those with an autism diagnosis.
Question 2: Biology
Cognitive studies: These are studies of psychological and mental processes, including memory, producing and understanding language, solving problems, and making decisions. Projects in this subcategory consist of those that investigate theory of mind, social cognition and empathy, understanding facial expressions of emotion (and how and why this is impaired in ASD), and recall and memory.
Computational science: Computational methods and modeling allow for the synthesis and study of large and complex sets of data. Some projects in this subcategory collect extensive experimental biological and behavioral data and use powerful computing techniques to reveal new insights. Other aspects of computer science are also included, such as developing statistical modeling techniques to better understand the biology of autism.
Co-occurring conditions: Research on conditions that often co-occur with ASD is included here, such as seizures/epilepsy, sleep disorders, gastrointestinal dysfunction, wandering/elopement behavior, attention deficit hyperactivity disorder (ADHD), and familial autoimmune disorders.
Developmental trajectory: Projects in this subcategory often include longitudinal studies following various aspects of biological and behavioral development in the same individuals over time. Examples include brain growth, face processing, change in neural connectivity over time, and development of communication skills and language processing. These studies often compare children with ASD to typically developing children or to their unaffected siblings.
Immune/Metabolic pathways: These projects focus on understanding the biological mechanisms of metabolism and the immune system that may be altered in autism, typically in cells and animal models. This largely includes studies on inflammation and inflammatory molecules (i.e., cytokines), as well as on the role of mitochondria, energy metabolism, and oxidative stress. Also included in this group are projects seeking to identify specific immune and metabolic triggers in early prenatal and post-natal life, such as maternal infection, maternal auto-antibodies, and toxic exposures.
Molecular pathways: This subcategory includes studies on specific molecules and proteins (other than the immune and metabolic systems) that may be involved in the development of ASD and related genetic disorders (e.g., fragile X syndrome and Rett syndrome). Many of these projects use animal and cellular models to explore the biological effects of specific candidate genes and to identify common molecular pathways, including alterations in synaptic functioning and intracellular signaling cascades.
Neural systems: Studies in this subcategory explore the structure and activity of the brain and underlying neural systems involved in autism, including functional connections between brain regions. Many projects seek to identify the precise neural networks underlying communication and language processing, social interactions, and behavioral issues. These studies frequently employ imaging techniques, such as functional magnetic resonance imaging (fMRI) and diffusion tensor imaging (DTI), and other physiological measures of brain activity, such as electroencephalography (EEG).
Neuropathology: These projects typically include post-mortem examination of brain tissue from ASD individuals. Many of the studies in this subcategory explore how the architecture of the brain may be altered in individuals with autism or how gene expression varies in different areas of the brain.
Sensory and motor function: Projects in this subcategory explore the neural underpinnings of motor skills and abilities in children with ASD and assess visual, auditory, and other sensory processes in the brain.
Subgroups/Biosignatures: Because there is so much heterogeneity among individuals with autism, research to understand how certain subgroups of individuals that share certain behavioral or biological characteristics could help understand some of the underlying biology in ASD. This can be done by searching for certain biological factors ("signatures"), such as hormone levels or structural abnormalities in the brain, that define a particular subgroup. Many of these projects try to make the connection between certain genes with a known or suspected link to autism and the observable characteristic, or phenotype, that they cause.
Question 3: Risk Factors
Environment: This subcategory includes a number of projects investigating potential environmental risk factors for autism. Example projects include studies of the effects of the microbiome, environmental contaminants and toxins, maternal dietary factors, medications taken during pregnancy or to induce labor, assistive reproductive treatments, child and maternal response to immune challenge, and registries where many of these factors can be tracked simultaneously.
Epigenetics: Epigenetics is the study of heritable changes in gene function that occur without a change in the DNA sequence (such as methylation of DNA). Environmental factors can cause these changes in gene expression, and projects in this subcategory seek to identify some of the environmental influences that may lead to these epigenetic changes.
Gene-Environment: These studies search for combinations of environmental risk factors and genetic susceptibility that increase the risk for ASD. (Note: While epigenetic studies often fit this definition, they are tracked separately for strategic planning purposes.)
Genetic risk factors: Projects in this subcategory seek to identify new genes that are implicated in increased risk for ASD or to better understand genetic risk factors that were previously identified.
Question 4: Treatments and Interventions
Behavioral: Projects in this subcategory involve a wide array of behavioral research and training methods, including applied behavior analysis (ABA), cognitive-behavioral therapy, discrete trial training, Early Start Denver Model, imitation training, joint attention training, Lovaas method, pivotal response training, sibling-mediated interventions, and social skills training.
Complementary, dietary, and alternative: This subcategory includes research on acupressure; acupuncture; antioxidants; cholesterol supplementation; glutathione metabolism; nutritional supplements, vitamins, and minerals; probiotics; and special diets (e.g., gluten-free, casein-free).
Educational: Nearly all research in classroom settings falls under this subcategory, including curricula, educational best practices, inclusive education programs, math and reading training, positive behavioral supports, special education programs, TEACCH (Treatment and Education of Autistic and Related Communication-Handicapped Children), and the "Social Stories" approach.
Medical/Pharmacologic: This subcategory includes research on drugs (e.g., antidepressants, anticonvulsants, antipsychotics, anxiolytics, melatonin, and stimulants) to treat autism and its co-occurring conditions, as well as medical therapies such as transcranial magnetic stimulation (TMS).
Model systems/Therapeutic targets: Animal models mimicking behaviors of ASD and those that are being used to develop or test new drug treatments, as well as cell lines used to discover new drug targets or to screen potential drug candidates, are included in this subcategory.
Occupational, physical, and sensory-based: Therapies in this subcategory encompass art therapy, motor training (including fine motor skills such as handwriting as well as gross motor training involving balance and posture), music therapy, occupational therapy, pet (animal) therapy, physical activity plans and exercise therapy (bike riding, swimming), physical therapy, sensory integration, therapeutic horseback riding, training in self-care and daily living skills, and vocational rehabilitation.
Technology-based interventions and supports: Augmentative and alternative communication (AAC), computer applications and software, picture exchange communication system (PECS), social robots, teleconferencing, video modeling and virtual reality (including virtual and 3D environments to mimic social situations), and wearable sensors are all examples of the types of technology in the projects in this subcategory.
Question 5: Services
Community inclusion programs: These programs provide instruction in social, communication, and leisure skills to enable individuals with autism to participate in sports, recreation, and social-integration activities in fully integrated settings and to build successful relationships with others.
Efficacious and cost-effective service delivery: This subcategory includes programs involving web-based curricula and interventions as well as telehealth methodology, all of which could benefit those in underserved areas. Various parent training projects (to deliver a behavioral therapy, for example) using web-based methods such as teleconsultation and videofeedback make distributing the training programs cost-effective and accessible across the country. Studies to improve dental care are also in this subcategory for effective service delivery.
Family well-being and safety: Studies in this subcategory evaluate issues of caregiver stress and measures of quality of life for individuals with ASD and their families, as well as assess programs to help parents navigate the service system after their child receives an ASD diagnosis. It also surveys safety issues for those with autism, including wandering and bullying.
Practitioner training: Projects in this subcategory seek to increase skill levels in service providers, including medical providers, direct support workers, parents and legal guardians, education staff, and public service workers.
Services utilization and access: These projects include surveys of service systems available in different States, evaluations of patterns of medical service use among children with autism, a comprehensive online resource for autism services, and specific efforts in several States to coordinate services for people with autism. They also evaluate disparities in diagnosis and service utilization as well as barriers to access for racial and ethnic minorities.
Question 6: Lifespan Issues
Due to the small number of projects (34) and the significant overlap between topics covered in these projects, no subcategories were created for this question in the 2010 Portfolio Analysis Report. As the research field grows, subcategories that encapsulate the scope of projects in this question may be defined in the future.
Question 7: Infrastructure and Surveillance
Biobanks: A biobank is a type of biorepository which stores human biological samples for use in research. Projects in this subcategory support collection of DNA and tissue samples from autism patients.
Data tools: These projects include bioinformatics databases to store genetic, phenotypic, and other medical information from autism patients. They also support infrastructure for several of these major databases to interact.
Research infrastructure: This subcategory includes coordinating centers that support multiple research projects by running tests, analyzing data, and providing statistical analyses. These projects also support facilities that operate large, shared instruments used by several scientists to test research samples.
Research recruitment and clinical care: Projects in this subcategory help increase participation in research studies and conduct medical evaluations for the participants, often collecting data that can be used for multiple studies.
Research workforce development: Workshops, conferences, and training programs that serve to expand the research workforce, enhance interdisciplinary research training, and recruit early-career scientists into the ASD field are included in this subcategory.
Surveillance and prevalence studies: Research that measures autism prevalence in the U.S. and internationally is contained in this subcategory, including the Autism and Developmental Disabilities Monitoring (ADDM) Network sites maintained by the Centers for Disease Control and Prevention (CDC).
Appendix C: NIH ARRA Initiatives
The table below lists the American Recovery and Reinvestment Act (ARRA) funding initiatives from the National Institutes of Health (NIH) that specifically mention autism or that funded autism research projects. For additional details, the announcement number can be searched at http://grants1.nih.gov/grants/guide/index.html. In the table, the "Activity Code" refers to the type of funding mechanism used to support the research projects (described in detail below the table).
Announcement Number | Release Date | Activity Code | Title |
---|---|---|---|
Announcement Number |
Release Date03/23/2009 |
Activity CodeR01 |
TitleResearch to Address the Heterogeneity in Autism Spectrum Disorders |
Announcement Number |
Release Date03/23/2009 |
Activity CodeR01 collaborative |
TitleResearch to Address the Heterogeneity in Autism Spectrum Disorders |
Announcement Number |
Release Date03/23/2009 |
Activity CodeR21 |
TitleResearch to Address the Heterogeneity in Autism Spectrum Disorders |
Announcement Number |
Release Date03/23/2009 |
Activity CodeR34 and R34 collaborative |
TitleResearch to Address the Heterogeneity in Autism Spectrum Disorders |
Announcement Number |
Release Date03/04/2009 |
Activity CodeRC1 |
TitleNIH Challenge Grants in Health and Science Research: 04-MH-101: Autism: Addressing the Challenge |
Announcement Number |
Release Date03/04/2009 |
Activity CodeRC1 |
TitleNIH Challenge Grants in Health and Science Research: 05-MH-101: Leveraging Existing Healthcare Networks for Comparative Effectiveness Research on Mental Disorders and Autism |
Announcement Number |
Release Date03/04/2009 |
Activity CodeRC1 |
TitleNIH Challenge Grants in Health and Science Research: 05-MH-103: Collaboration with AHRQ Comparative Effectiveness Research Program |
Announcement Number |
Release Date03/04/2009 |
Activity CodeRC1 |
TitleNIH Challenge Grants in Health and Science Research: 05-MH-104: Building ASD Registries for Use in Comparative Effectiveness Research |
Announcement Number |
Release Date03/04/2009 |
Activity CodeRC1 |
TitleDNIH Challenge Grants in Health and Science Research: 08-MH-101: Beyond GWAS: Deep Sequencing of Mental Disorders |
Announcement Number |
Release Date3/30/2009 |
Activity CodeP30 |
TitleSupporting New Faculty Recruitment to Enhance Research Resources through Biomedical Research Core Centers |
Announcement Number |
Release Date4/20/2009 |
Activity CodeR15 |
TitleAcademic Research Enhancement Award |
Announcement Number |
Release Date12/28/2009 |
Activity CodeRC4 |
TitleNIH Director's Opportunity for Research in Five Thematic Areas |
R01: Supports a research project in an area representing the specific interest and competencies of the investigator.
R21: Exploratory/developmental grant to encourage the development of new research activities.
R34: Provides support for the initial development of a clinical trial.
RC1: NIH Challenge Grants in Health and Science Research
P30: Supports shared resources and facilities for research by several investigators from different disciplines that focus on a common research area.
R15: Academic Research Enhancement Awards (AREA) that support small scale research projects primarily at undergraduate institutions.
RC4: Supports high impact research and research infrastructure programs.
Footnotes
1 Budget recommendations were formulated by scientific and program experts in the field and provide an estimate of what it would cost to conduct each project. The IACC provides these budget recommendations as guidance to Federal agencies and partner organizations on the potential cost of conducting the recommended research. The IACC's role in research is advisory, and the Committee does not have its own research budget to conduct or support research.
Cover Design
Nicole Jones, Office of Autism Research Coordination, National Institute of Mental Health, NIH
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
Office of Autism Research Coordination, National Institute of Mental Health, on behalf of the Interagency Autism Coordinating Committee (IACC). 2010 IACC Autism Spectrum Disorder Research Portfolio Analysis Report. July 2012. Retrieved from the U.S. Department of Health and Human Services Interagency Autism Coordinating Committee website: http://iacc.hhs.gov/portfolio-analysis/2010/index.shtml.