Autism Data Science Initiative Data Resources

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Example Table Information
Table 1: National Institute of Mental Health Data Archive
Table 2: NICHD Data and Specimen Hub
Table 3: Database of Genotypes and Phenotypes
Table 4: National Metabolomics Data Repository
Table 5: Human Health Exposure Analysis Resource Data Center
Table 6: NHGRI Analysis Visualization and Informatics Lab-space
Table 7: National Longitudinal Transition Study-2
Table 8: National Survey of Children’s Health
Table 9: Medical Expenditure Panel Survey
Table 10: Medicaid and the Children’s Health Insurance Program
Table 11: Kaiser Permanente Research Bank
Table 12: Autism Speaks MSSNG Database
Table 13: Simons Foundation Autism Research Initiative (SFARI) Base
Table 14: National Clinical Cohort Collaborative (N3C) Data Enclave
Table 15: All of Us Research Hub
Table 16: PEDSnet: A pediatric learning health system
Table 17: UK Biobank
Table 18: ECHO Cohort Data

Example Table Information #extable

Field Name	Field Definition
Repository Full Name	The proper name for the repository and/or acronym spell-out
Repository Short Name	Acronym or short name for repository if one exists
Brief Description	Description of the repository and the purpose it serves
Web Address	Homepage URL for the repository
Help Email	Email link for general public to contact repository staff
Affiliation	The organization that hosts and maintains the database and associated software
Organism	The types of organisms from which data are shared in the repository
Research Areas	The research domain(s) for which the repository shares data
Data Types	Keywords for types of data associated with the repository. Data types are sourced directly from the repository website without further interpretation; different repositories may use different terms to describe the same type of data.
Controlled Access	Whether the repository has a controlled access option for access to datasets: "Yes", The repository includes controlled access option; "No", The repository does not include controlled access option; "Unclear", Unclear if the repository includes a controlled access option, or repository website does not specify this information.
Data Access Control Description	List of which options the repository offers for access to hosted datasets: "Open access", No access restrictions or registration required to access; "Registration required", Open to all, but users need to be signed in or registered with the resource to access; "Controlled access", Requires verification of requestor identity and the appropriateness of their proposed research use to access protected data by some review process/committee; "Enclave", Controlled access where data cannot be downloaded or removed from a specific environment.
Data Access Control Links	URL to information about data access controls
Fairsharing Link	URL to the fairsharing.org listing where one exists.

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Table 1: National Institute of Mental Health Data Archive #table1

Field Name	Field Definition
Repository Full Name	The National Institute of Mental Health Data Archive
Repository Short Name	NIMH NDA
Brief Description	The NIMH NDA is a large-scale repository that houses a wide variety of data related to autism, including behavioral, clinical, genetic, and neuroimaging data. Researchers can access de-identified data with appropriate approvals. The NDA encompasses data from the National Database for Autism Research (NDAR), the National Database for Clinical Trials related to Mental Illness (NDCT), the Research Domain Criteria Database (RDoCdb), and the NIH Pediatric MRI Data Repository, Adolescent Brain Cognitive DevelopmentSM, (ABCD) Study, the Connectome Coordination Facility (CCF), the Osteoarthritis Initiative (OAI), the National Institute on Alcohol Abuse and Alcoholism Data Archive, the Helping to End Addiction Long-term Initiative (NIH HEAL), the NeuroBioBank Data Repository, and the PsychENCODE Consortium. Researchers can access de-identified data with appropriate approvals.
Web Address	https://nda.nih.gov/
Help Email	ndahelp@mail.nih.gov
Affiliation	National Institute of Mental Health (NIMH)
Organism	Human subjects
Research Areas	Clinical studies, Medicine, Autism, Mental Illness, Cognitive Development, Neurology, Osteoarthritis, Alcohol Abuse and Alcoholism, Triplet Repeat Disease
Data Types	phenotypic data, imaging and other neurosignal recordings data, and genomic/pedigree data related to mental health on human subjects
Controlled Access	Yes
Data Access Control Description	Open access; Registration required; and Controlled access
Data Access Control Links	https://nda.nih.gov/nda/access-data-info
Fairsharing Link	https://fairsharing.org/3209

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Table 2: NICHD Data and Specimen Hub #table2

Field Name	Field Definition
Repository Full Name	NICHD Data and Specimen Hub
Repository Short Name	NICHD DASH
Brief Description	NICHD Data and Specimen Hub (DASH) allows researchers to share and access de-identified data from studies funded by NICHD and also serves as a portal for requesting biospecimens from selected DASH studies. DASH hosts deidentified datasets from clinical and population health studies funded by NICHD and relevant to the NICHD mission, including the National Children's Study and the Environmental influences on Child Health Outcomes (ECHO)-wide Cohort study
Web Address	https://dash.nichd.nih.gov/
Help Email	SupportDASH@mail.nih.gov
Affiliation	Eunice Kennedy Shriver National Institute of Child Health and Human Development
Organism	Human subjects
Research Areas	Life science, Critical Care Medicine, Pediatrics, Biomedical Science, Clinical Studies, Demographics, Gynecology, Obstetrics, Pharmacology, Social Science, Medicine, Musculoskeletal Medicine, Reproductive Health, Behavior, Sleep, Safety
Data Types	Research data and biospecimens
Controlled Access	Yes
Data Access Control Description	Controlled access
Data Access Control Links	https://dash.nichd.nih.gov/resource/policies https://dash.nichd.nih.gov/resource/request
Fairsharing Link	https://fairsharing.org/FAIRsharing.dYSI4O

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Table 3: Database of Genotypes and Phenotypes #table3

Field Name	Field Definition
Repository Full Name	Database of Genotypes and Phenotypes
Repository Short Name	DbGAP
Brief Description	DbGaP archives and distributes the data and results from studies that have investigated the interaction of genotype and phenotype in humans. It includes genomic data from the NIH-funded Autism Sequencing Consortium and additional relevant studies.
Web Address	https://www.ncbi.nlm.nih.gov/gap/
Help Email	dbgap-help@ncbi.nlm.nih.gov
Affiliation	National Center for Biotechnology Information, National Library of Medicine
Organism	Human subjects
Research Areas	Biomedical Science, Genetics, Epigenetics, Expression Data, Genetic Polymorphism, Phenotype, Genotype
Data Types	phenotype data, association (GWAS) data, summary level analysis data, SRA (Short Read Archive) data, reference alignment (BAM) data, VCF (Variant Call Format) data, expression data, imputed genotype data, image data, etc.
Controlled Access	Yes
Data Access Control Description	Controlled access
Data Access Control Links	https://dbgap.ncbi.nlm.nih.gov/aa/wga.cgi?page=login https://www.ncbi.nlm.nih.gov/books/NBK570247/
Fairsharing Link	https://fairsharing.org/FAIRsharing.88v2k0

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Table 4: National Metabolomics Data Repository #table4

Field Name	Field Definition
Repository Full Name	National Metabolomics Data Repository
Repository Short Name	NMDR, Metabolomics Workbench
Brief Description	Repository for metabolomics data and a resource for analytic tools and protocols.
Web Address	https://www.metabolomicsworkbench.org/
Help Email	help@metabolomicsworkbench.org
Affiliation	UC San Diego, National Institutes of Health Common Fund
Organism	Human subjects
Research Areas	Metabolomics for small and large studies on cells, tissues and organisms
Data Types	Processed data (measurements) maybe in the form of quantitated metabolite concentrations, MS peak height/area values, LC retention times, NMR binned areas, etc. Raw data in the form of MS and NMR binary files and associated parameter files may also be uploaded.
Controlled Access	No
Data Access Control Description	Open-access enclave
Data Access Control Links	N/A
Fairsharing Link	https://fairsharing.org/FAIRsharing.xfrgsf

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Table 5: Human Health Exposure Analysis Resource Data Center #table5

Field Name	Field Definition
Repository Full Name	Human Health Exposure Analysis Resource Data Center
Repository Short Name	HHEAR Data Center
Brief Description	A large, de-identified data repository of epidemiologic and environmental exposure biomarker data including studies with relevant autism and neurodevelopmental outcomes.
Web Address	https://hheardatacenter.mssm.edu/
Help Email	HHEARsupport@mssm.edu
Affiliation	Icahn School of Medicine at Mount Sinai; National Institute of Environmental Health Sciences.
Organism	Human subjects
Research Areas	Clinical Studies, Public Health, Epidemiology, Exposure, Environmental Health
Data Types	Biomarker measurements
Controlled Access	Yes
Data Access Control Description	Registration required
Data Access Control Links
Fairsharing Link	https://fairsharing.org/FAIRsharing.88v2k0

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Table 6: NHGRI Analysis Visualization and Informatics Lab-space #table6

Field Name	Field Definition
Repository Full Name	NHGRI Analysis Visualization and Informatics Lab-space
Repository Short Name	AnVIL
Brief Description	A unified computing environment for genomics data storage, management, and analysis of genomics and related data. It enables population-scale analysis, and facilitates collaboration through the sharing of data, code, and analysis results. The core data management and analysis components of the AnVIL currently consists of Terra, Gen3, Galaxy, RStudio/Bioconductor, Dockstore, and Jupyter.
Web Address	https://anvilproject.org/
Help Email	anvil@mail.nih.gov
Affiliation	National Human Genome Research Institute
Organism	Human subjects
Research Areas	Genomics
Data Types	Biomarker measurements
Controlled Access	Yes
Data Access Control Description	Registration required
Data Access Control Links	https://anvilproject.org/faq/data-security
Fairsharing Link	https://fairsharing.org/FAIRsharing.88v2k0

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Table 7: National Longitudinal Transition Study-2 #table7

Field Name	Field Definition
Repository Full Name	National Longitudinal Transition Study-2
Repository Short Name	NLTS2
Brief Description	The National Longitudinal Transition Study-2 was commissioned by the US Department of Education and documented experiences of students aged 13-16, as they moved from secondary school into adult roles. The NLTS2 includes data on secondary school experiences of youth in special education, including their schools, school programs, related services, and extracurricular activities and measures outcomes in education, employment, social, and residential domains including factors that contribute to more positive outcomes.
Web Address	https://nlts2.sri.com/
Help Email	nlts2@sri.com
Affiliation	Department of Education
Organism	Human subjects
Research Areas	Special Education
Data Types	Parent/youth interview, school survey, student assessment data, demographic data, household characteristics
Controlled Access	No; Yes
Data Access Control Description	Open Access; Controlled Access
Data Access Control Links	https://nces.ed.gov/statprog/rudman/
Fairsharing Link	N/A

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Table 8: National Survey of Children’s Health #table8

Field Name	Field Definition
Repository Full Name	National Survey of Children’s Health
Repository Short Name	NSCH
Brief Description	The NSCH is funded by the Health Resources & Services Administration (HRSA) and supports national efforts to improve the health and development of children. National and state level data are released annually and focus on key measures of child health and well-being to understand the health status and health services needs of children across the nation. Data from the Children with Special Health Care Needs (CSHCN) are also included and explores the extent to which children with special health care needs have medical homes, adequate health insurance, access to needed services, and adequate care coordination. Other topics include functional difficulties, transition services, shared decision-making, and satisfaction with care.
Web Address	https://mchb.hrsa.gov/data-research/national-survey-childrens-health
Help Email	NSCH@hrsa.gov
Affiliation	Health Resources & Services Administration (HRSA)
Organism	Human subjects
Research Areas	Physical and emotional health of children, access to and use of health care, family interactions, parental health, school and after-school experiences, neighborhood characteristics
Data Types
Controlled Access	No
Data Access Control Description	Open; Registration Required
Data Access Control Links	https://www.census.gov/programs-surveys/nsch/data/datasets.html https://www.childhealthdata.org/dataset
Fairsharing Link	N/A

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Table 9: Medical Expenditure Panel Survey #table9

Field Name	Field Definition
Repository Full Name	Medical Expenditure Panel Survey
Repository Short Name	MEPS
Brief Description	Funded by the Agency for Healthcare Research and Quality, the MEPS is a set of large-scale surveys of families and individuals, their medical providers, and employers across the United States. MEPS is the most complete source of data on the cost and use of health care and health insurance coverage. The Household Component provides data from individual households and their members, which is supplemented by data from their medical providers. The Insurance Component is a separate survey of employers that provides data on employer-based health insurance.
Web Address	https://meps.ahrq.gov/mepsweb/
Help Email	mepsprojectdirector@ahrq.hhs.gov
Affiliation	Agency for Healthcare Research and Quality
Organism	Human subjects
Research Areas	Access to health care, Children’s Health, Men’s Health, Women’s Health, Elderly Health, Insurance, Disability, Minority Health, employment, Health Care Disparities, Home Health Care, Employment, Injuries, Mental Health, Obesity, Opioids, Pharmacy & Prescription Drugs, Preventative Care, Preventative Care, Arthritis, Asthma, Cancer, Diabetes, Emphysema and Bronchitis, Heart Conditions, High Blood Pressure, High Cholesterol, Strokes, Quality of Health Care, Veteran’s Health, Vision Impairment, Health expenditures
Data Types
Controlled Access	No; Yes
Data Access Control Description	Open access; Enclave
Data Access Control Links	https://meps.ahrq.gov/mepsweb/data_stats/onsite_datacenter.jsp
Fairsharing Link	N/A

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Table 10: Medicaid and the Children’s Health Insurance Program #table10

Field Name	Field Definition
Repository Full Name	Medicaid and the Children’s Health Insurance Program Open Data
Repository Short Name	Medicaid & CHIP Open Data
Brief Description	Data.Medicaid.gov is a public platform offering open access to a diverse range of datasets related to Medicaid and the Children’s Health Insurance Program (CHIP). It is tailored to support policymakers, researchers, and the general public by providing critical data for research, reporting, and analysis. The platform covers various topics, including state Medicaid and CHIP programs, enrollment statistics, spending trends, and quality metrics.
Web Address	https://data.medicaid.gov
Help Email	Medicaid.gov@cms.hhs.gov
Affiliation	U.S. Centers for Medicare & Medicaid Services
Organism	Human subjects
Research Areas	Drug utilization, drug pricing and payment, enrollment, reimbursements, behavioral health care, demographics, maternal health, mental health, disability, dental health, telehealth, substance use disorder, managed care
Data Types
Controlled Access	No
Data Access Control Description	Open
Data Access Control Links	N/A
Fairsharing Link	N/A

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Table 11: Kaiser Permanente Research Bank #table11

Field Name	Field Definition
Repository Full Name	Kaiser Permanente Research Bank
Repository Short Name	KP Research Bank
Brief Description	The KP Research Bank includes robust data and specimen collection from members of a real-world health system, including genomic data resources. The retrospective, longitudinal medical records available include over 440K participants recruited through multiple outreach efforts since 2008, and extends more than 20 years for the majority of the cohort. Researchers can apply to use this resource tailored to their specific study design.
Web Address	https://researchbank.kaiserpermanente.org/for-researchers/
Help Email	https://researchbank-econsent.kaiserpermanente.org/ContactUs/Index?ref=noreferrer&lang=en
Affiliation	Kaiser Permanente
Organism	Human subjects
Research Areas	General health, cancer, pregnancy,
Data Types	biospecimens, genomic data, self-reported health survey data, and KP clinical data
Controlled Access	Yes
Data Access Control Description	Controlled access
Data Access Control Links	https://researchbank.kaiserpermanente.org/for-researchers/apply-for-access/
Fairsharing Link	N/A

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Table 12: Autism Speaks MSSNG Database #table12

Field Name	Field Definition
Repository Full Name	Autism Speaks MSSNG Database
Repository Short Name	MSSNG
Brief Description	The MSSNG project aims to create a whole genome sequencing database on autism with deep phenotyping, with a focus on identifying subtypes of autism to inform diagnostics and personalized treatments. Data are available upon request.
Web Address	https://research.mss.ng/
Help Email	asgenetics@autismspeaks.org
Affiliation	Autism Speaks, Verily, DNAstack, Hospital for Sick Children (SickKids)
Organism	Human subjects
Research Areas	Autism
Data Types	Genomic data, phenotypic data
Controlled Access	Yes
Data Access Control Description	Controlled access
Data Access Control Links	https://autismspeaks.fluxx.io/ https://research.mss.ng/assets/documents/db7/genomics-application-process_2.5.2025.docx
Fairsharing Link	N/A

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Table 13: Simons Foundation Autism Research Initiative (SFARI) Base #table13

Field Name	Field Definition
Repository Full Name	Simons Foundation Autism Research Initiative Base
Repository Short Name	SFARI Base
Brief Description	SFARI Base is a clearinghouse for autism and autism-related research data and biospecimens supported by the Simons Foundation Autism Research Initiative (SFARI). It includes the Simons Simplex Collection, a permanent repository of genetic samples from 2,700 simplex families; Simons Foundation Powering Autism Research (SPARK), a collection of medical and behavioral information for over 100,000 people with autism; and The Autism Inpatient Collection (AIC), which includes phenotypic and genetic data from 1,555 children with a clinical diagnosis of autism who have been admitted to one of six specialized inpatient child psychiatry units in the United States. Researchers can request access to phenotypic, genetic, or imaging data and order biospecimens.
Web Address	https://www.sfari.org/resource/sfari-base/
Help Email	sdbr@simonsfoundation.org (application process) requests@autismbrainnet.org (Autism BrainNet tissue request process)
Affiliation	Simons Foundation Autism Research Initiative
Organism	Human subjects
Research Areas	Autism
Data Types	Research data and biospecimens
Controlled Access	Yes
Data Access Control Description	Controlled Access
Data Access Control Links	https://base.sfari.org/
Fairsharing Link	N/A

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Table 14: National Clinical Cohort Collaborative (N3C) Data Enclave #table14

Field Name	Field Definition
Repository Full Name	National Clinical Cohort Collaborative
Repository Short Name	N3C
Brief Description	The N3C Data Enclave is a secure platform designed to store and manage harmonized clinical data contributed by partner healthcare institutions. The Enclave houses comprehensive demographic and clinical data across broad patient populations and health conditions. Data available for research include electronic health records, clinical outcomes, treatments, and interventions. Additional data from publicly available datasets, claims data, and mortality are also available. For details on cohort definitions and data inclusion, please refer to the N3C web page.
Web Address	https://n3c.ncats.nih.gov/
Help Email	ncatsn3cclinical@mail.nih.gov
Affiliation	National Center for Advancing Translational Sciences (NCATS), National Institutes of Health
Organism	Human subjects; Sars-cov-2
Research Areas	Clinical Studies, Medical Virology, Public Health, Patient Care, Cardiovascular Disease, Diabetes & Obesity, Environmental Health, Immunocompromised or Compromised (ISC), Oncology, Rural Health, Social Drivers of Health
Data Types	Clinical data
Controlled Access	Yes
Data Access Control Description	Enclave
Data Access Control Links	https://n3c.cd2h.org/registration
Fairsharing Link	https://fairsharing.org/FAIRsharing.bbbffe

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Table 15: All of Us Research Hub #table15

Field Name	Field Definition
Repository Full Name	All of Us Research Hub
Repository Short Name	N/A
Brief Description	The All of Us Research Hub houses a large and comprehensive dataset where users can explore aggregate data including genomic variants, survey responses, physical measurements, electronic health record information, and wearables data. Registered users can use the Researcher Workbench to analyze Registered and Controlled tier data with a variety of cloud-based analysis tools.
Web Address	https://www.researchallofus.org/
Help Email	support@researchallofus.org
Affiliation	National Institute of Health
Organism	Human subjects
Research Areas	general health, social factors, health care access and utilization, drug exposures, chronic disease, health behavior, genomics
Data Types	Research data, survey data, genomics data, Electronic Health Records (EHR) data, self-reported physical measurements, digital health data
Controlled Access	Yes
Data Access Control Description	Open; Registration Required; Controlled Access; Enclave. There are multiple access tiers with access controls that accord with the risk of the data within a given tier.
Data Access Control Links	https://support.researchallofus.org/hc/en-us/categories/8951135815700-Access-DURA-Support
Fairsharing Link	N/A

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Table 16: PEDSnet: A pediatric learning health system #table16

Field Name	Field Definition
Repository Full Name	PEDSnet: A pediatric learning health system
Repository Short Name	PEDSnet
Brief Description	PEDSnet contains demographic and clinical data from over 15,000,000 pediatric patients across the United States. The system aligns information from outpatient, inpatient, and emergency department visits to a common data model and makes them available to authorized users through a secure data portal.
Web Address	https://pedsnet.org/database/
Help Email	pedsnet@chop.edu
Affiliation	PEDSnet (a Clinical Research Network within PCORnet)
Organism	Human subjects
Research Areas	Demographics, Diagnoses, Medications, Lab Measurements, Procedures, Providers, Visits
Data Types	EHR, research data
Controlled Access	Yes
Data Access Control Description	Controlled Access
Data Access Control Links	https://pedsnet.org/database/access-to-data/
Fairsharing Link	N/A

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Table 17: UK Biobank #table17

Field Name	Field Definition
Repository Full Name	UK Biobank
Repository Short Name	UK Biobank
Brief Description	UK Biobank is a large-scale biomedical database and research resource, containing in-depth, de-identified genetic and health information from half a million UK participants. The database, which is regularly augmented with additional data, is globally accessible to approved researchers and scientists undertaking vital research into the most common and life-threatening diseases. UK Biobank provides data on half a million people ages 40-69 living in the UK.
Web Address	https://www.ukbiobank.ac.uk/
Help Email	access@ukbiobank.ac.uk
Affiliation	Wellcome Trust, Medical Research Council, Department of Health, Scottish Government, and the Northwest Regional Development Agency
Organism	Human subjects
Research Areas	Research areas involving human health and disease
Data Types	Electronic Health Records, Surveys and Questionnaires, Research visit, Wearable Fitness Device, Genomic, Registry, Imaging, Genetics, Health linkages, Biomarkers, Baseline assessments
Controlled Access	Yes
Data Access Control Description	Registration required
Data Access Control Links	https://www.ukbiobank.ac.uk/enable-your-research/register https://ams.ukbiobank.ac.uk/ams/signup
Fairsharing Link	N/A

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Table 18: ECHO Cohort Data #table18

Field Name	Field Definition
Repository Full Name	The Environmental influences on Child Health Outcomes (ECHO) Data Analysis Center ECHO Cohort Data Platform
Repository Short Name	ECHO Cohort Data Platform
Brief Description	ECHO Cohort has data on approximately 130,000 maternal and child participants, representing births in all 50 states, D.C., and Puerto Rico, including study sites with enriched sampling for autism spectrum disorder. The ECHO Cohort has more than 123,000 biospecimens in its biorepository. Because of the ECHO Cohort’s nationwide coverage, analyzing data from ECHO participants takes advantage of ample statistical power for addressing many important child health research questions.To browse metadata from the ECHO Cohort Data Platform, you must request access from the ECHO Data Analysis Center to the public version of “ECHOPortal,” which includes access to the ECHO Cohort Platform: Inform and Provide User Search (PlatIPUS) and Resource Library.
Web Address	https://echoportal.org/Account/Register
Help Email	echo-help@rti.org
Affiliation	ECHO Data Analysis Center (Johns Hopkins University and RTI International) with support from the NIH ECHO Program
Organism	Human subjects
Research Areas	Clinical studies, children’s health, medicine, autism, mental illness, cognitive development, neurology, pediatrics, biomedical sciences, demographics, obstetrics, pharmacology, social sciences, behavioral health, sleep, genetics, epigenetics, various types of –omics data, public health, exposures, environmental health, physical and emotional health of children, neighborhood characteristics, airways health and pulmonology, obesity and metabolism, opioids, preventative care, asthma, diabetes, maternal health, mental health, substance use disorder, early development, environmental influences, positive health, prenatal health, perinatal health, postnatal health, neurodevelopment
Data Types	Research data on early development, health conditions, demographics, environments, pregnancy and birth, public health, information on biospecimen collections, biomarkers, non-omics bioassay, omics including genomics, metabolomics, epigenomics, and microbiome, medical record extractions, self-report questionnaires, parent report questionnaires, sleep and physical activity wearables, spirometry, neurocognitive measures, placental imaging
Controlled Access	Yes
Data Access Control Description	The ECHO Data Platform is a data enclave, with controlled access data that users cannot download or remove from the analysis environment. Access control is administered by the ECHO Cohort Steering Committee and the NIH ECHO Program through the ECHO Cohort’s Ancillary Studies Process, which requires a Letter of Support from the ECHO Cohort Steering Committee, and an X01 award from the NIH ECHO Program. To finalize access to the data platform, analysts must complete training and certification by the ECHO Data Analysis Center for access Platform’s analysis workbench.
Data Access Control Links	https://echochildren.org/-echo-ancillary-studies/
Fairsharing Link	N/A

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