Datasets and Research Resources | NICHD

The ABCD Data Repository houses all data generated by the Adolescent Brain Cognitive Development Study, the largest prospective study of brain development and child health in the United States.

NIH launched the Accelerating COVID-19 Therapeutic Interventions and Vaccines (ACTIV) as a public-private partnership in April 2020 as part of the global COVID-19 response to speed development of COVID-19 vaccines and treatments by streamlining administrative processes, while maintaining rigorous safety standards. Through ACTIV, NIH is focusing on four fast-track areas most ripe for opportunity, each led by a group of senior scientists from a range of disciplines and organizations.

The Bioengineering and Information Science Technology Initiative: The focus of biomedical computing activities at the NIH is the BISTI Consortium (BISTIC), which consists of senior-level representatives from each NIH Institute and Center, plus representatives from other federal agencies concerned with biocomputing. The BISTI site includes information about BISTI symposia and funding opportunities in bioinformatics.

BRADS is a repository for data and biospecimen collections from various population health research initiatives and clinical or interventional trials designed and implemented by NICHD's Division of Population Health. Collections include studies on human reproduction and development, pregnancy, child health and development, and women's health.

CIDR provides high-quality, next-generation sequencing and genotyping services, as well as statistical genetics consultation, to investigators working to discover genes that contribute to disease.

The Center for Research in Reproduction Ligand Assay and Analysis Core at the University of Virginia uses state-of-the-art methods to study peptide and steroid reproductive hormones in blood and tissue. It also develops new methodology; prepares labeled reagents for immunoassays, immunocytochemistry, and binding studies; and assists in the transfer of technology to participating investigators.

Certificates of Confidentiality Kiosk  help researchers protect the privacy of human research participants enrolled in biomedical, behavioral, clinical and other forms of sensitive health-related research.

The Cincinnati Magnetic Resonance Imaging of Neurodevelopment (C-Mind) Project aims to create standardized methods for recruiting, scanning, and processing data using functional magnetic resonance imaging (fMRI), coupled with arterial spin-labeling perfusion, and to investigate language development and attention brain processes of typically developing children using task fMRI. Software, manuals, and raw and processed data will be available to the scientific community. The C-Mind Project is led by the Pediatric Neuroimaging Research Consortium at Cincinnati Children's Hospital Medical Center, in collaboration with the laboratory of Neuroimaging at the University of California, Los Angeles, and is funded through an NICHD contract.

The Clinical and Translational Science Awards (CTSA) Consortium is a national consortium of medical research institutions, funded through CTSAs, is working together to improve the way biomedical research is conducted nationwide. Consortium members share a common vision to reduce the time it takes for laboratory discoveries to become treatments for patients, to engage communities in clinical research efforts, and to train clinical and translational researchers.

Clinical Genome Resource (ClinGen) was founded in 2013, and is a centralized resource that collects and archives information about clinically relevant genes and genomic variants for use in precision medicine and research. This NIH-funded consortium includes more than 1,700 contributors from more than 40 countries dedicated to expanding available genetic and genomic data

Cochrane Neonatal Collaborative Reviews provide access to current evidence in neonatology and help to reduce the gap between the time when a treatment's effectiveness and safety is established in research and its routine use by healthcare providers.

Contraceptive Infertility Target Database (CITDBase) is a public resource, funded through the Contraceptive Development Program in the Division of Population Health, is a curation of public databases that lists human reproductive track, reproductive system, and reproductive tissue-specific contraceptive gene and protein targets for investigators. The goal of CITDBase is to identity potential contraceptive gene and protein targets and foster collaborative efforts between the investigators from different areas of contraceptive and infertility research.

Data and Specimen Hub (DASH) is a centralized resource for researchers to store and access de-identified data from studies funded by NICHD. It was developed to help investigators meet NIH's data sharing requirements for their own studies and find study data from other investigators for secondary analyses.

Data Sharing for Demographic Research (DSDR) is funded through NICHD's Population Dynamics Branch. The project aims to serve the demographic community by archiving, preserving, and disseminating data relevant for population studies.

Deltagen and Lexicon Knockout Mice and Phenotypic Data Resource is a resource NIH has contracted with Deltagen Inc., and Lexicon Genetics Inc., to provide the agency and its scientific partners with access to 251 lines of knockout mice that have been extensively characterized.

DS Connect^™: The Down Syndrome Registry is a secure, web-based national resource for storing and sharing demographic and health information about people with Down syndrome. The registry will help identify those people with Down syndrome who might be eligible to take part in research studies or clinical trials and connect them with the researchers leading those studies

Food and Drug Administration (FDA) Office of Pediatric Therapeutics works with NICHD, NIH, the World Health Organization, and other international groups, academia, and professional and advocacy organizations to analyze pediatric trials, identify ethical and safety issues, and publish and disseminate data and results.

Foreign Grants Information: NIH provides a central location for information related to elements of the grants process specific to foreign applicants and grantees.

Gabriella Miller Kids First Pediatric Research Program is an integrated data resource to explore underlying genetic etiologies that may contribute to both structural birth defects and cancer.

Gallus Expression <em>in Situ</em> Hybridization Analysis (GEISHA) is an online repository for chicken in situ hybridization information. This site presents whole mount in situ hybridization images and corresponding probe and genomic information for genes expressed in chicken embryos in Hamburger Hamilton stages 1-25 (0.5-5 days).

Gene Expression Database (GXD) collects and integrates gene expression information in the Mouse Genome Informatics database.

Within the HEAL (Helping to End Addiction Long-term℠) Initiative, NICHD efforts are focused on understanding how opioids affect infants, children, and pregnant and reproductive-age women. The institute is supporting multiple research activities related to opioids, in keeping with NIH’s overall efforts to find scientific solutions to the opioid epidemic.

Health Services Research (HSR) Information Central (National Library of Medicine) maintains this portal for the HSR community and includes resources from the Agency for Healthcare Research and Quality, the National Cancer Institute, and the Health Services Research and Development Service at the Veterans Administration, among others. The portal also provides access to evidence-based practice and health technology assessments, information on meetings and conferences, and resources on grants, funding, and fellowships for those working in the HSR community.

Human Endometrial Tissue and DNA Bank serves as an evolving bioinformatics resource on genes associated with the uterus

INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) project is a trans-NIH research initiative will investigate critical health and quality-of-life needs for individuals with Down syndrome. INCLUDE will investigate conditions that affect individuals with Down syndrome and the general population, such as Alzheimer’s disease/dementia, autism, cataracts, celiac disease, congenital heart disease, and diabetes.

Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders (ICCFASD)seeks to exchange information and to coordinate federal strategies and programs to more effectively address FAS/ARND on a national level. The Committee promotes and facilitates the development of collaborative projects within and between member organizations.

Jackson Laboratories Cytogenetic Models Resource maintains and distributes chromosome aberration stocks that provide primarily mouse models for Down syndrome. 

Jackson Laboratories Neural Tube Defects Resource maintains and distributes mouse models for neural tube defects.

Knockout Mouse Project (KOMP) is a trans-NIH initiative that aims to generate a comprehensive and public resource comprised of mice containing a null mutation in every gene in the mouse genome.

Mammalian Gene Collection (MGC) provides full-length, open reading frame clones for human and mouse genes, which are available for distribution to the scientific community.

Mammalian Reproductive Genetics Database provides information regarding genes and literature related to mammalian reproduction.

NICHD established the Maternal-Fetal Medicine Units (MFMU) Network, funded through the Pregnancy and Perinatology Branch, in 1986 to focus on research questions in perinatology, maternal-fetal medicine, and obstetrics. The network provides the infrastructure to conduct multiple large-scale clinical and observational studies to investigate the safety and efficacy of obstetric treatments and management strategies. Results from MFMU Network studies have influenced clinical practice and informed treatment recommendations. Several datasets from completed MFMU studies are publicly available.

Medical Rehabilitation Research Resource (MR3) Network is a network of centralized research infrastructure assists young faculty at the formative stage of their careers. MR3 centers provide workshops and courses, mentorship and collaborative opportunities, access to state-of-the-art facilities, and pilot grants in domains particularly relevant to rehabilitation researchers. The network offers a broad range of expertise including regenerative medicine, clinical aspects of neuromodulation, biomechanics and modelling of movement, clinical trial design, health services and analysis of large datasets, and technology assessment and product development.

MRI Study of Normal Brain Development is a multi-site longitudinal study uses technologies (e.g., anatomical MRI, diffusion-tensor imaging [DTI], and magnetic resonance spectroscopy [MRS]) to map pediatric brain development. More than 500 children, ranging from infancy to young adulthood, were enrolled in the study. Clinical/behavioral assessment data and raw and volumetric brain MR data are available to researchers.

National Children's Study (NCS) Vanguard Data and Sample Archive and Access System (NCS Archive) provides researchers with access to data and samples collected in the NCS Vanguard Study, which tested methods and procedures planned for use in a large epidemiological cohort study of environmental influences on child health and development.

National Gene Vector Biorepository (NGVB) is composed of an interactive group of academic production and pharm/tox labs whose primary goal is to provide clinical grade vectors for Phase I/II gene therapy clinical trials and support for relevant pharmacology/toxicology data leading up to clinical gene transfer protocols.

National Institute of Mental Health Data Archive (NDA) is an NIH-supported informatics platform for data repositories that includes relevant data at all levels of biological and behavioral organization (i.e., molecules, genes, neural tissues, social and environmental interactions, etc.) and for all data types (i.e., text, numeric, image, time series, etc.). NDA was developed to share data across multiple research domains and to facilitate collaboration across laboratories and interconnectivity with other platforms. The National Database for Autism Research houses autism spectrum disorder-related data.

Neonatal Research Network (NRN) was established to conduct multi-center clinical trials and observational studies in neonatal medicine to promote healthy outcomes for newborns.

Neuroscience Research Support at NICHD: NICHD is committed to supporting research in the neurosciences, particularly as they affect developing systems and rehabilitation. This site provides a central location for the Institute's extramural neuroscience research information.

Neuroscience@NIH is an NIH-wide effort to promote research being conducted and supported in the neurosciences.

NICHD Study of Early Child Care and Youth Development (SECCYD) Datasets and Documentation: Phase I and II protocol documentation and datasets containing analysis and item-level variables are available to qualified researchers. Researchers who qualify become affiliates with the SECCYD. The application process is required to protect the rights of participants.

NIH Common Fund identifies compelling opportunities in three main areas: new pathways to discovery, research teams of the future, and re-engineering the clinical research enterprise.

NIH Human Embryonic Stem Cell Registry lists the derivations of stem cells that are eligible for federal funding.

NIH NeuroBioBank is a repository, funded by NICHD, the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, and the National Institute on Aging, is a centralized resource for collecting and distributing brain tissue for research. The bank serves as the single point of access for six biorepositories, including brain and tissue banks at the University of Maryland and the University of Miami established and previously funded by NICHD. Biospecimens in the NeuroBioBank span neurological, neuropsychiatric, and neurodevelopmental diseases, disabilities, and disorders.

NIH Neuroscience Blueprint seeks to enhance cooperative activities among 15 NIH Institutes and Centers that support research on the nervous system. By pooling resources and expertise, the Blueprint can take advantage of economies of scale, confront challenges too large for any single Institute or Center, and develop research tools and infrastructure that will serve the entire neuroscience community.

NIH Pain Consortium seeks to enhance pain research and promote collaboration among researchers across the many NIH institutes and centers that have programs and activities addressing pain.

Ovarian Kaleidoscope Database provides information regarding the biological function, expression pattern, and regulation of genes expressed in the ovary. It also contains information on gene sequences, chromosomal localization, human and murine mutation phenotypes, and biomedical publications.

Pediatric Brain Templates: The Imaging Research Center at the Cincinnati Children's Hospital Medical Center has collected brain-imaging data from a large population of normal, healthy children. These data have been used to construct pediatric brain templates, which can be used within statistical parametric mapping for spatial normalization, tissue segmentation, and visualization of imaging study results. The data have been processed and compiled in various ways to accommodate a wide range of possible research approaches. The templates are available free of charge to all interested parties for research purposes only.

Pediatric Trials Network (PTN) is funded through NICHD’s Obstetric and Pediatric Pharmacology and Therapeutics Branch, PTN aims to improve the dosing, safety, and effective use of therapeutic drugs in newborns and older children through clinical trials that lead to drug labeling changes for these populations. PTN conducts pediatric clinical drug trials in a variety of therapeutic areas, including infectious diseases, gastroenterology, neonatal diseases, psychiatry, neurology, respiratory diseases, anesthesia and analgesia, cardiovascular diseases, medications during lactation, and medical devices. PTN also offers a methods sharing resource for analyzing drug concentrations in various types of pediatric patient samples.

PhysioNet offers free web access to large collections of recorded physiologic signals (PhysioBank) and related open-source software (PhysioToolkit). The goal of the site is to promote, catalyze, and perform basic-to-bedside research in complex biomedical systems by making physiologic and clinical data available in open Internet-accessible archives; developing innovative open-source software for the exploration and analysis of physiologic data; and creating a multidisciplinary "laboratory without walls" to facilitate the discovery of basic and translational information on complex physiologic signals. By freely disseminating large and well-characterized collections of data and related software, the project aims to reduce barriers for researchers and students whose work requires these essential materials.

Placental Atlas Tool (PAT) integrates placental data from publications and public databases into a single website for the research community. PAT offers analytic and imaging tools to support placental research, secondary analysis, and hypothesis generation.

Prevention Research at NICHD cover a range of topics, such as preterm labor and birth, mother-to-child-transmission of HIV and other infectious diseases, pediatric obesity, rehabilitation through physical activity and exercise, pregnancy loss, and newborn screening.

Reproductive Genomics Program: Mutant Models for Infertility uses ENU mutagenesis to produce mouse models of infertility and includes mutagenesis of the mouse genome, phenotypic screening for infertility mutations, and regional mapping of each mutation to a chromosome. Breeding stock is available for scientists interested in using these models in their own research programs.

Therapeutics for Rare and Neglected Diseases (TRND) is a congressionally mandated program designed to bridge the gap between basic research discoveries and testing of new drugs in humans. The work of TRND includes the discovery, optimization, and preclinical testing of therapies, with the ultimate goal of generating data to support successful investigational new drug applications to the U.S. Food and Drug Administration, and first-in-human studies (if necessary). The program aims to encourage biotechnology and pharmaceutical companies to take the therapeutic clinical candidates that reach this stage into clinical development.

Trans-NIH Strategic Plan for Women’s Health Research is a 5-year plan that highlights a multipronged pathway to advance a vision in which sex and gender influences are integrated into the biomedical research enterprise; every woman receives evidence-based disease prevention and treatment tailored to her own needs, circumstances, and goals; and women in science careers reach their full potential. A collaborative group of leaders from the NIH Institutes, Centers, and Offices; external stakeholders; and the public all participated in developing the plan.

Trans-NIH Structural Birth Defects Working Group (SBDWG) brings together NIH program officials to help facilitate advances in our understanding of the etiology, mechanisms, epidemiology, prevention, and treatment of structural birth defects.

Xenopus Gene Collection (XGC) supports the production of cDNA libraries, clones, and sequences to provide a set of full-length, open reading frame sequences and cDNA clones of expressed genes for Xenopus. All resources are publicly available for the biomedical scientific community.

Zebrafish Gene Collection (ZGC) supports the production of cDNA libraries, clones, and sequences to provide a set of full-length, open reading frame sequences and cDNA clones of expressed genes for zebrafish. All resources are publicly available for the biomedical scientific community.