Repositories

The Federal Interagency Traumatic Brain Injury Research (FITBIR) Informatics System is a biomedical informatics system and data repository for Traumatic Brain Injury (TBI) research. It is a collaborative effort involving the NIH Institutes and Centers (ICs) and the US Army Medical Research and Development Command (USAMRDC). 

The FITBIR System is an informatics platform for TBI relevant data including medical imaging, clinical assessment, environmental and behavioral history, etc. and a wide variety of data types (text, numeric, image, time series, etc.). FITBIR has developed a data dictionary system allowing investigators to define additional TBI data elements and measures. The system was developed to share data across the entire TBI research field, facilitate collaboration between laboratories, and interconnectivity with other informatics platforms. The platform allows the sharing of data, methodologies, and associated tools, allowing re-analysis of data, as well as re-aggregation, integration, and comparison with other data, tools, and methods. It utilizes common data definitions and standards with comprehensive and coherent informatics approaches. 

The National Institute of Mental Health Data Archive (NDA) is a single infrastructure that was created through the integration of a set of research data repositories including the National Database for Autism Research (NDAR), the Research Domain Criteria Database (RDoCdb), the National Database for Clinical Trials related to Mental Illness (NDCT), and the NIH Pediatric MRI Repository (PedsMRI). 

The NDA integrates several other data repositories in addition to NIMH data archive, all combined and harmonized in one database for broad querying. Repositories currently supported include: NIMH Data Archive, Adolescent Brain Cognitive Development Study (ABCD) Data Repository, Connectome Coordination Facility (CCF), The Osteoarthritis Initiative (OAI), and the National Institute on Alcohol Abuse and Alcoholism Data Archive (NIAAADA) 

The NDA makes available human subjects data collected from hundreds of research projects across many scientific domains. 

The NDA is an informatics system and research data repository that provides the infrastructure to store, search across, and analyze various types of data. In addition, the NDA provides longitudinal storage of a research participant's information generated by one or more research studies thereby associating a single research participant's genomic, imaging, clinical assessment, and other information, even if the data were collected at different locations or through different studies. This allows researchers access to more data, making it easier and faster to gather, evaluate, and share research information from a variety of sources.

The NDA infrastructure provides for sharing research data, tools, methods, and analyses enabling collaborative science and discovery. De-identified human subjects data, harmonized to a common standard, are available to qualified researchers.  

NICHD DASH is a centralized resource for researchers to store and access de-identified data from NICHD-funded research studies for  secondary research use. It is a mechanism for NICHD-funded investigators to share research data from studies in accordance with NIH Data Sharing Policies. Many of the NICHD-funded research studies also collected biospecimens that are stored in the NICHD Contracted Biorepository. To provide access to these biospecimens, NICHD DASH stores and make available to other investigators the biospecimen catalog for studies that have associated research data in NICHD DASH. By supporting data and biospecimen access through NICHD DASH, NICHD aims to accelerate scientific findings and improve human health.

The Biospecimen Repository Access and Data Sharing (BRADS) is designed to provide access to a variety of studies and data collected though the Division of Intramural Population Health Research (DIPHR). It maintains an extensive repository of datasets from completed studies, including biospecimens and ancillary data. DIPHR is funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). DIPHR research areas include: biostatistics, bioinformatics, epidemiology as well as social and behavioral sciences.

BRADS includes a variety of studies ranging from diabetes and early pregnancy, infant mortality, neural tube defects, perinatal and fetal growth, epidural analgesia during labor and delivery, management of early pregnancy failure trial, to swimming lessons and the risk of drowning in children.

The Data Sharing for Demographic Research (DSDR) is a data sharing project providing curation, archiving services and a shared data infrastructure to support demographers housed in the population centers  funded by the National Institute of Child Health and Human Development (NICHD) and researchers whose data have particular relevance to the demographic and population sciences community. Topics include health and mortality, early life conditions, children and youth as well as older adult health. Although DSDR focuses on data collected through funding from the NICHD Population Dynamics Branch (PDB), it also provides services for other data sets that fall within the scientific mission of PDB.

DSDR is supported by the PDB of the Eunice Kennedy Shriver National Institute of Child Health and Human Development and housed within the Inter-university Consortium for Political and Social Research (ICPSR) at the University of Michigan.

The Archive of Data on Disability to Enable Policy and research (ADDEP) brings together existing disability data housed by the Inter-university Consortium for Political and Social Research (ICPSR) with newly acquired data from rehabilitation medicine and related areas. It provides access to data containing a wide range of topics related to disability and rehabilitation including, but not limited to: disability status, health care, rehabilitation services and medicine, employment, income, education, disability policies. ADDEP is a joint initiative of ICPSR, based at the University of Michigan and the Center for Large Data Research and Data Sharing in Rehabilitation (CLDR), and is funded through an NIH grant. 

The Inter-university Consortium for Political and Social Research (ICPSR) maintains a data archive of approximately 250,000 files including nearly 15,000 studies of research in the social and behavioral sciences.  It hosts 21 specialized collections of data including: disability and rehabilitation (ADDEP), demographic research (DSDR), education, aging, criminal justice, substance abuse, terrorism, and other fields.

ICPSR has a 50-year history of archiving and preserving data collections. It is an international consortium of more than 750 academic institutions and research organizations and provides leadership and training in data access, curation, and methods of analysis for the social science research community. 

ICPSR collaborates with a number of funders, including U.S. statistical agencies and foundations, to create thematic data collections and data stewardship and research projects. NICHD (DSDR), NIA (NACDA), and NIDA (NAHDAP) currently support specialty archives that use the ICPSR infrastructure. ICPSR is a unit within the Institute for Social Research at the University of Michigan 

The National Institute on Drug Abuse (NIDA) mission is to lead the nation in bringing the power of science to bear on drug abuse and addiction. NIDA Data Share is a data repository that allows data from completed clinical trials focused on drug abuse and addiction to be distributed to investigators and the public in order to promote new research, encourage further analyses, and disseminate information to the community. 

The National Institute of Neurological Disorders and Stroke (NINDS) Parkinson’s Disease (PD) Biomarkers Program Data Management Resource (PDBP DMR) enables web-based data entry for clinical studies supporting PD biomarker development, as well as broad data sharing across the PD research community (i.e., imaging, clinical, genetic, and biospecimen analysis). The PDBP DMR coordinates information and access to PD biospecimens distributed through the NINDS Human Genetics, DNA, iPSC, Cell Line and Biospecimen Repository, and the Harvard Neurodiscovery Initiative.

The program is a multi-site study where data collected from the individual sites are integrated in the PDBP database. Data are collected from PD patients, atypical Parkinsonian patients, patients with essential tremor, and healthy controls. All study subjects are asked to submit blood samples as well as a battery of clinical evaluations including motor, cognitive, and other background information. Additionally, a subset of subjects contribute cerebrospinal fluid samples.

The PDBP DMR coordinates this information and provides access to the information collected. It is designed to foster collaboration for all stakeholders, allow integration and leveraging of existing biomarker efforts, standardize data collection and management across efforts, and accelerate the discovery of new biomarkers.

ClinicalTrials.gov is a registry and results database of publicly and privately supported clinical studies of human participants conducted around the world including all 50 states and 210 countries. As of 2020 it contained over 335,000 research studies and provides access to aggregate results for nearly 30,000 clinical studies. Results submissions include all pre-specified primary and secondary outcomes as well as serious adverse events. Some studies include links to sites where the data have been deposited.

For intervention studies the description includes information regarding the dosage, length of time received, etc. For observational studies the description includes the participant groups observed along with any treatments or exposures that are of interest to the study. 

Each clinical trial entry includes: study description, study design (study type, enrollment, start and completion dates and official title), eligibility criteria, outcome measures, contacts and locations, and information on references and links to Web sites that are relevant to the study.  More recently added studies may include protocol documents, statistical analysis plans, and informed-consent forms to further inform users about a study’s design. 

ClinicalTrials.gov assigns a unique identifier, the NCT number, to each registered study. The NCT number facilitates searches for related documents about a clinical trial (e.g., publications, data repositories, press releases, and news articles).