Data Sharing and Other Resources

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BRADS: Biospecimen Repository Access and Data Sharing
DS Connect^TM: The Down Syndrome Registry
Gabriella Miller Kids First Pediatric Research Program
DASH: NICHD Data and Specimen Hub

Data sharing is essential to speed translation of research results into knowledge, therapies, and procedures to improve human health. NICHD is committed to sharing data from its research and supports a variety of resources and tools for researchers. These resources include tissue banks and repositories, datasets and databases, model organisms, genome and DNA sequences, and resource libraries.

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Brain and Tissue Banks
Clinical Research Confidentiality
Databases, Genetics, Genomics, and Model Organisms
Datasets, Image Sets and Registries
Research Consortia, Committees and Working Groups
Research Initiatives and Funding
Therapeutics

Brain and Tissue Banks

Brain and Tissue Bank for Developmental Disorders (University of Maryland, Baltimore)
The objective of this human tissue repository is to systematically collect, store, and distribute brain and other tissues for research dedicated to the improved understanding, care and treatment of individuals with developmental disorders.
Brain and Tissue Bank for Developmental Disorders (University of Miami)
This resource encourages brain donation to support medical and scientific researchers who study the human brain in search of better medications and treatments for brain diseases and disorders.

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Clinical Research Confidentiality

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

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Databases, Genetics, Genomics, and Model Organisms

Center for Inherited Disease Research (CIDR)
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.
Center for Research in Reproduction Ligand Assay and Analysis Core
This 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.
Cytogenetic Models Resource
The Jackson Laboratory Cytogenetic Models Resource maintains and distributes chromosome aberration stocks that provide primarily mouse models for Down syndrome.
Deltagen and Lexicon Knockout Mice and Phenotypic Data 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.
Endometrium Database Resource (EDR)
The goal of EDR is to serve as an evolving Bioinformatics Resource on genes associated with the uterus.
Gabriella Miller Kids First Pediatric Research Program
Integrated data resource to explore whether shared genetic pathways may contribute to both structural birth defects and cancer.
Gallus Expression in Situ Hybridization Analysis (GEISHA)
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)
GXD collects and integrates gene expression information in the Mouse Genome Informatics database.
International HapMap Project
The haplotype map, or "HapMap," will be a tool that will allow researchers studying the human genome to find genes and genetic variations that affect health and disease.
Jackson Laboratories Neural Tube Defects Resource
The Jackson Laboratory Neural Tube Defects Resource maintains and distributes mouse models for neural tube defects.
Knockout Mouse Project (KOMP)
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)
MGC provides full-length, open reading frame clones for human and mouse genes, which are available for distribution to the scientific community.
Mammalian Reproductive Gene Database
Provides information regarding genes and literature related to mammalian reproduction.
National Database for Autism Research (NDAR)
NDAR is an informatics platform for Autism Spectrum Disorders (ASDs) that includes relevant data at all levels of biological and behavioral organization (i.e., molecules, genes, neural tissues, social, and environmental interactions) and for all data types (i.e., text, numeric, image, time series, etc.). NDAR was developed to share data across the entire ASD field and to facilitate collaboration across laboratories and interconnectivity with other platforms.
National Gene Vector Biorepository (NGVB)
The 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.
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.
Reproductive Genomics Program: Mouse Models of Infertility
This program 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.
Sea Urchin Genome Database (SpBase)
SpBase is designed to present the results of the genome sequencing project for the purple sea urchin. The sequences and annotations emerging from this effort are organized in a database that provides the research community access to those data not normally presented through National Center for Biotechnology Information and other large databases.
Xenopus Gene Collection (XGC)
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)
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.

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Datasets, Image Sets and Registries

BRADS: Biospecimen Repository Access and Data Sharing 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 Intramural Population Health Research. Collections include studies on human reproduction and development, pregnancy, child health and development, and women's health.
Cincinnati Magnetic Resonance Imaging of Neurodevelopment (C-Mind) Project
This 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.
Data Sharing for Demographic Research (DSDR)
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.
DS Connect™: The Down Syndrome Registry
DS Connect 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.
Health Services Research (HSR) Information Central (National Library of Medicine)
The 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.
Maternal-Fetal Medicine Units Network (MFMU)
NICHD created the MFMU to focus on clinical questions in maternal-fetal medicine and obstetrics. Datasets from MFMU studies are available online.
MRI Study of Normal Brain Development
This 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)
The 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.
Neonatal Research Network (NRN)
NRN was established to conduct multi-center clinical trials and observational studies in neonatal medicine to promote healthy outcomes for newborns.
NICHD 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.
NICHD Study of Early Child Care and Youth Development (SECCYD) Public Use Datasets
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 Human Embryonic Stem Cell Registry
The NIH Human Embryonic Stem Cell Registry lists the derivations of stem cells that are eligible for federal funding.
NIH Research Portfolio Online Reporting Tool Expenditures and Reports (RePORTER)
RePORTER is a database of funded projects that allows users to locate and view NIH awards using their own search criteria. RePORTER provides detailed budget information, research results, and products, including patents and publications. Data from 1985 to the present are available and searchable.
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.
PhysioNet
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.

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Research Consortia, Committees and Working Groups

BECON: The Bioengineering Consortium
BECON is the focus of bioengineering activities at the NIH. The Consortium consists of senior-level representatives from all of the NIH Institutes, Centers, and Divisions, plus representatives from other federal agencies concerned with biomedical research and development.
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.
Clinical and Translational Science Awards (CTSA) Consortium
A national consortium of medical research institutions, funded throughCTSAs, 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.
Cochrane Neonatal Collaborative Reviews
An effort to relay technical and research information to health care providers, researchers, and interested publics. These reviews provide efficient 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 health care providers.
Interagency Coordinating Committee on Fetal Alcohol Syndrome (ICCFAS)
The objectives of the ICCFAS are 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.
Trans-NIH Structural Birth Defects Working Group (SBDWG)
The Trans-NIH 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.

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Research Initiatives and Funding

Foreign Grants Information
NIH provides a central location for information related to elements of the grants process specific to foreign applicants and grantees.
Medical Rehabilitation Research Resource Network
This network of centralized research infrastructure assists young faculty at the formative stage of their careers. These centers across the country provide state-of-the-art research facilities, mentorship, pilot grants, and other opportunities particularly relevant to rehabilitation researchers. The Network offers a broad range of expertise, including molecular/cellular biology, muscle physiology and function, biomechanical modeling, bioengineering and robotics, outcomes measures, analysis of large administrative and research datasets, and translation and commercialization of research.
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
This NIH-wide effort seeks to promote research being conducted and supported in the neurosciences.
NIH Common Fund
The 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 Neuroscience Blueprint
The Blueprint is a framework 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.

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Therapeutics

Food and Drug Administration (FDA) Office of Pediatric Therapeutics
The 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.
Therapeutics for Rare and Neglected Diseases (TRND)
The NIH TRND program 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.

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