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| Resource Name | Proper Citation | Abbreviations | Resource Type |
Description |
Keywords | Resource Relationships | |||||||||||||
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Pediatric Acute Liver Failure Study Resource Report Resource Website |
Pediatric Acute Liver Failure Study (RRID:SCR_001478) | PALF | portal, research forum portal, data or information resource, topical portal, disease-related portal, resource | Study group and network for a 2008 longitudinal study for the etiology, diagnosis, treatment, and outcome of acute liver failure in infants, children, and adolescents. Data from patients include urine, bile, serum, liver tissue, cell lines derived from fibroblast culture, and DNA. | management strategy, infant, child, adolescent, clinical, liver, patient care, rare disease, blood, tissue, longitudinal, urine, bile, serum, liver tissue, cell line, fibroblast culture, dna, etiology, diagnosis, treatment, outcome |
is listed by: NIDDK Information Network (dkNET) is related to: Acute Liver Failure Study Group has parent organization: University of Pittsburgh; Pennsylvania; USA |
Acute liver failure | NIDDK U01DK072146 | Free, Freely available | nlx_152715 | http://www.palfstudy.org/ | SCR_001478 | Pediatric Acute Liver Failure (PALF) Study, Pediatric Acute Liver Failure (PALF) Study Group | 2026-02-15 09:18:06 | 0 | ||||
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HALT-C Trial Resource Report Resource Website |
HALT-C Trial (RRID:SCR_001534) | HALT-C Trial, HALT-C | bibliography, data or information resource, clinical trial, resource | Multi-center, randomized controlled study designed to determine if continuing interferon long term over several years will suppress the Hepatitis C virus, prevent progression to cirrhosis, prevent liver cancer and reduce the need for liver transplantation. Patient enrollment began in 2000 and was completed in 2003 at 10 clinical centers, which were supported by a data coordinating center, virological testing center, and central sample repository. Patients with chronic hepatitis C and advanced fibrosis or cirrhosis on liver biopsy who failed to respond to a previous course of interferon alfa were enrolled in this study. Patients were initially treated with a 24-week course of peginterferon alfa-2a and ribavirin. Patients who remained hepatitis C virus RNA positive were then randomized to receive maintenance, low-dose peginterferon or to be followed on no treatment. Liver biopsies were done before enrollment and after 2 and 4 years of treatment or follow-up. The endpoints were development of cirrhosis, hepatic decompensation, hepatocellular carcinoma, death, or liver transplantation. 1050 patients were randomized and followed through the 4 year randomized phase of the trial and as long as 4 years off treatment. Serum samples collected at multiple time points, DNA and liver tissue are available for scientific investigation. | interferon, progression, cirrhosis, prevention, liver cancer, liver transplantation, liver, pegylated interferon, clinical, outcome, adult human, dna, liver tissue, serum, blood, b lymphoblastoid cell-line, epstein-barr virus infection in peripheral blood mononuclear cell, peripheral blood mononuclear cell, biomaterial supply resource, formalin fixed, histology, frozen, stained liver slide, unstained liver slide, advanced fibrosis, liver biopsy, peginterferon alfa-2a, ribavirin |
is listed by: One Mind Biospecimen Bank Listing is listed by: ClinicalTrials.gov is listed by: NIDDK Central Repository is listed by: NIDDK Research Resources is listed by: NIDDK Information Network (dkNET) |
Hepatitis C virus, Chronic hepatitis C | NIDDK | Free, Freely available | nlx_152835 | http://archives.niddk.nih.gov/haltctrial/displaypage.aspx?pagename=haltctrial/index.htm | http://www.haltctrial.org/ | SCR_001534 | Hepatitis C Antiviral Long-term Treatment against Cirrhosis, Hepatitis C Antiviral Long-term Treatment against Cirrhosis (HALT-C) Trial, Hepatitis C Antiviral Long-term Treatment against Cirrhosis Trial | 2026-02-15 09:18:07 | 0 | |||
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Brain Dynamics Centre Resource Report Resource Website |
Brain Dynamics Centre (RRID:SCR_001685) | topical portal, data or information resource, database, portal | The Brain Dynamics Centre (BDC) is a network of centers and units. It achieves a unique exploration of the healthy brain and disorders of brain function. It translates these insights into new ways to tailor treatments to the individual. There approach is: "integrative neuroscience" - bringing together clinical observations, theory, and modern imaging technologies. And it's theoretical framework derives from linking physiology, psychology and evolution. Additionally, BDC also actively researches ADHD and conduct disorder, stress and trauma-related problems, depression and anxiety, anorexia nervosa, psychosis (including early onset) and conversion disorders. The research facilities DBC include assessment, rooms, two cognition-brain function laboratories, genotyping and an MRI Suite with 1.5 and 3T GE systems. BDC is the coordinating site for an international network - BRAINnet. It has over 180 members, and coordinates access to the first standardized database on the human brain for scientific purposes: Brain Resource International Database. | evolution, function, genetics, adhd, anorexia nervosa, anxiety, behavior, brain, brain disorder, brain imaging, clinical, cognition, conduct disorder, conservation disorder, database, depression, disorder, genotyping, healthy, human, keywords: brain, laboratory, mental illness, mri, neuroscience, onset, physiology, post traumatic stress disorder (ptsd), psychology, psychosis, research, stress, technology, trauma, treatment | Free, Freely Available | nif-0000-10177 | SCR_001685 | BDC | 2026-02-15 09:18:09 | 0 | |||||||||
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Duke University Medical Center: Duke Image Analysis Laboratory Resource Report Resource Website 10+ mentions |
Duke University Medical Center: Duke Image Analysis Laboratory (RRID:SCR_001716) | topical portal, data or information resource, database, portal | THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 23,2022. The Duke Image Analysis Laboratory (DIAL) is committed to providing comprehensive imaging support in research studies and clinical trials to various agencies. The capabilities of the lab include protocol development, site training and certification, and image archival and analysis for a variety of modalities including magnetic resonance imaging, magnetic resonance spectroscopy, computed tomography and nuclear medicine. DIAL uses the latest technologies to analyze Magnetic Resonance Imaging (MRI) data sets of the brain. Currently the lab is engaged in measurement of the hippocampus, amygdala, caudate, ventricular system, and other brain regional volumes. Each of these techniques have undergone a rigorous validation process. The measurements of brain structures provide a useful means of non-invasively testing for changes in the brain of the patient. Changes over time in the brain can be detected, and evaluated with respect to the treatment that the patient is receiving. Magnetic Resonance Spectroscopy (MRS) allows DIAL to obtain an accurate profile of the chemical content of the brain. This sensitive technique can detect small changes in the metabolic state of the brain; changes that vary in response to administration of therapeutic agents. The ability to detect these subtle shifts in brain chemistry allows DIAL to identify changes in the brain with more sensitivity than allowed by image analysis. In this respect, NMR spectroscopy can provide early detection of changes in the brain, and serves to compliment the data obtained from image analysis. Additionally, DIAL also contains SQUID (Scalable Query Utility and Image Database). It is an image management system developed to facilitate image management in research and clinical trials: SQUID offers secure, redundant image storage and organizational functions for sorting and searching digital images for a variety of modalities including MRI, MRS, CAT Scan, X-Ray and Nuclear Medicine. SQUID can access images directly from DUMC scanners. Data can also be loaded via DICOM CDs, THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025. | academic, amygdala, analysis, biotechnology, brain, cat scan, caudate, chemical, clinical, computed, development, digital, hippocampus, imaging, lab, laboratory, magnetic resonance imaging, magnetic resonance spectroscopy, medical, medicine, metabolic, mri, mrs, nmr, nuclear, nuclear medicine, pharmaceutical, research, spectroscopy, structure, technology, therapeutic, tomography, treatment, trial, ventricular, ventricular system, volume, x-ray, FASEB list | has parent organization: Duke University; North Carolina; USA | THIS RESOURCE IS NO LONGER IN SERVICE | nif-0000-10213 | SCR_001716 | DMC DIAL | 2026-02-15 09:18:09 | 33 | ||||||||
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Michael J. Fox Foundation for Parkinsons Research Resource Report Resource Website 50+ mentions |
Michael J. Fox Foundation for Parkinsons Research (RRID:SCR_006183) | MJFF | portal, funding resource, data or information resource, topical portal, disease-related portal | A Parkinson's research foundation dedicated to finding a cure for Parkinson's disease and to ensuring the development of improved therapies. Pipeline Programs fund investigator-initiated proposals focused on the following critical points along the translational pathway to new therapies for Parkinson's disease. | parkinson's disease, clinical, translational, foundational, research, funding resource |
is related to: Biomarkers Across Neurodegenerative Diseases is parent organization of: Michael J. Fox Foundation Funded Grants is parent organization of: Biomarkers Across Neurodegenerative Diseases is parent organization of: Parkinson's Progression Markers Initiative is parent organization of: Parkinson's Disease Online Research |
Public, Funding available to researchers | nif-0000-00518 | SCR_006183 | Michael J. Fox Foundation for Parkinson's Research, Michael J. Fox Foundation | 2026-02-15 09:19:10 | 68 | |||||||
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BioMedBridges Resource Report Resource Website 1+ mentions |
BioMedBridges (RRID:SCR_006179) | BioMedBridges | organization portal, data or information resource, consortium, portal | Consortium of 12 Biomedical sciences research infrastructure (BMS RI) partners to develop a shared e-infrastructure to allow interoperability between data and services in the biological, medical, translational and clinical domains (providing a complex knowledge environment comprising standards, ontologies, data and services) and thus strengthen biomedical resources in Europe. The BMS RIs are on the roadmap of the European Strategy Forum on Research Infrastructures (ESFRI). Connecting several European research infrastructures brings a diversity of ethical, legal and security concerns including data security requirements for participating e-Infrastructures that are storing or processing patient-related data (or biosamples): EATRIS, ECRIN, BBMRI, EuroBioImaging and EMBL-EBI. In addition, INSTRUCT is interested in secure sample transport and in intellectual property rights; Infrafrontier stores high-throughput data from mice. BBMRI with its focus on the availability of biomaterials is currently emphasizing aspects like k-anonymity and metadata management for its data. Sharing of imaging data by Euro-BioImaging poses challenges with respect to anonymisation and intellectual property. Therefore, an ethical, regulatory and security framework for international data sharing that covers these diverse areas and different types of data (e.g. clinical trials data, mouse data, and human genotype and DNA sequence data) is of crucial importance. The outcomes will lead to real and sustained improvement in the services the biomedical sciences research infrastructures offer to the research community. Data curation and sample description will be improved by the adoption of best practices and agreed standards. Many improvements will emerge from new interactions between RIs created by data linkage and networking. Ensuring access to relevant information for all life science researchers across all BMS RIs will enable scientists to conduct and share cutting-edge research. | clinical, biomedical, infrastructure, technology, biology, medicine, translational, data sharing, biobank, genetic, stem cell, clinical trial, imaging, genotype, dna sequence, standard specification, interoperability |
is listed by: Consortia-pedia is related to: Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) has parent organization: European Bioinformatics Institute |
European Union FP7 Capacities Specific Programme 284209 | nlx_151726 | SCR_006179 | Building data bridges between biological and medical infrastructure in Europe (BioMedBridges), Building data bridges between biological and medical infrastructures in Europe, Building data bridges from biology to medicine in Europe | 2026-02-15 09:19:10 | 6 | |||||||
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BioGrid Australia Resource Report Resource Website 100+ mentions |
BioGrid Australia (RRID:SCR_006334) | BioGrid Australia | data analysis service, database, service resource, production service resource, data or information resource, analysis service resource | A federated data sharing platform and infrastructure that provides access to real-time clinical, imaging and biospecimen data across jurisdictions, institutions and diseases. The web-based platform provides a secure infrastructure that advances health research by linking privacy-protected and ethically approved data among a wide network of health collaborators. Access to de-identified health records data is granted to authorized researchers after an application process so patient privacy and intellectual property are protected. BioGrid Australia''s approved researchers are provided access to multiple institutional databases, via the BioGrid interface, preventing gaps in patient records and research analysis. This legal and ethical arrangement with participating collaborators allows BioGrid to connect data through a common platform where data governance and access is managed by a highly skilled team. Data governance, security and ethics are at the core of BioGrid''s federated data sharing platform that securely links patient level clinical, biospecimen, genetic and imaging data sets across multiple sites and diseases for the purpose of medical research. BioGrid''s infrastructure and data management strategies address the increasing need by authorized researchers to dynamically extract and analyze data from multiple sources whilst protecting patient privacy. BioGrid has the capability to link data with other datasets, produce tailored reports for auditing and reporting and provide statistical analysis tools to conduct more advanced research analysis. In the health sector, BioGrid is a trusted independent virtual real-time data repository. Government investment in BioGrid has facilitated a combination of technology, collaboration and ethics approval processes for data sharing that exist nowhere else in the world. | endocrinology, neuroscience, imaging, medicine, oncology, population, cancer, cystic fibrosis, diabetes, pet, mri, clinical, respiratory, health, epilepsy, neuropsychiatry, data sharing, FASEB list | Cancer, Diabetes, Epilepsy, Cystic fibrosis, Respiratory disease, Multiple Sclerosis, Stroke, Bone density | Closed; Authorized researchers only. | nlx_152036, r3d100012476 | https://doi.org/10.17616/R3921N | http://www.biogrid.org.au/wps/portal | SCR_006334 | BioGrid Australia Limited | 2026-02-15 09:19:25 | 294 | |||||
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XNAT Central Resource Report Resource Website 10+ mentions |
XNAT Central (RRID:SCR_006235) | XNAT Central | database, service resource, storage service resource, data repository, data or information resource, image repository | Online repository of open access images including MR Sessions, MRI, Freesurfer APARC, Freesurfer ASEGs, Clinical Assessments, Atlas Scaling Factors, and Fast Segmentations data. CENTRAL currently contains 374 Projects, 3808 Subjects, and 5174 Imaging Sessions (June 2014). Central is powered by XNAT (The Extensible Neuroimaging Archive Toolkit), an open source software platform designed to facilitate management and exploration of neuroimaging and related data. XNAT includes a secure database backend and a rich web-based user interface. | magnetic resonance, pet, computed tomography, neuroimaging, mri, computer axial tomography imaging protocol, freesurfer aparc, freesurfer aseg, clinical assessment, atlas scaling factor, fast segmentation, image collection, clinical |
is used by: NITRC-IR is used by: NIF Data Federation is used by: Integrated Datasets is listed by: re3data.org is related to: Morphometry BIRN is related to: XNAT - The Extensible Neuroimaging Archive Toolkit has parent organization: Washington University School of Medicine in St. Louis; Missouri; USA |
Free, Freely available | nif-0000-04375, r3d100010874 | https://doi.org/10.17616/R3533H | SCR_006235 | Extensible Neuroimaging Archive Toolkit CENTRAL | 2026-02-15 09:19:11 | 40 | ||||||
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FURTHeR Resource Report Resource Website 50+ mentions |
FURTHeR (RRID:SCR_006383) | FURTHeR | portal, database, service resource, storage service resource, community building portal, data repository, data or information resource | Data and knowledge management infrastructure for the new Center for Clinical and Translational Science (CCTS) at the University of Utah. This clinical cohort search tool is used to search across the University of Utah clinical data warehouse and the Utah Population Database for people who satisfy various criteria of the researchers. It uses the i2b2 front end but has a set of terminology servers, metadata servers and federated query tool as the back end systems. FURTHeR does on-the-fly translation of search terms and data models across the source systems and returns a count of results by unique individuals. They are extending the set of databases that can be queried. | biomedical, clinical, informatics, platform, federated, translation, institutional review board, data management software, clinical data, federation, FASEB list |
is related to: Clinical and Translational Science Awards Consortium has parent organization: University of Utah School of Medicine; Utah; USA |
National Center for Advancing Translational Sciences ; U.S. Department of Health and Human Services ; University of Utah Research Foundation ; NCRR UL1 RR025764 |
PMID:20351825 PMID:18999122 |
Restricted | nlx_152164 | http://www.further.utah.edu/ | SCR_006383 | Federated Utah Research and Translational Health Electronic Repository, FURTHeR - Federated Utah Research and Translational Health Electronic Repository | 2026-02-15 09:19:26 | 77 | ||||
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ePRISM Resource Report Resource Website 1+ mentions |
ePRISM (RRID:SCR_006386) | ePRISM | data management software, software application, software resource | Software application that supports the execution of multivariable prediction models with patient-specific characteristics so that personalized estimates of outcomes, often as a function of alternative treatments, can be generated within the routine flow of patient care. This can support evidence-based, shared medical decision-making to improve the safety, outcomes and cost-effectiveness of care. The current application is in the setting of generating individualized informed consent documents for PCI. However, the tool can support that translation of novel biomarkers, genetics and pharmacogenomic interactions into clinical care. The platform gives healthcare providers instantaneous access to the latest clinical prediction models coupled with rich visualization tools. These models may come from national organizations, outcomes researchers or a specific institution. In addition to decision support applications, it can be used to rapidly create personalized educational materials, patient letters, informed consent documents and a broad array of other items that can help elevate the quality of healthcare delivery. | healthcare, clinical, prediction model, visualization, platform |
is related to: Clinical and Translational Science Awards Consortium has parent organization: University of Kansas Medical Center; Kansas; USA |
nlx_152166 | SCR_006386 | Patient Refined Information Services Manager | 2026-02-15 09:19:15 | 3 | ||||||||
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cTAKES Resource Report Resource Website 10+ mentions |
cTAKES (RRID:SCR_006379) | cTAKES | text-mining software, software application, source code, software resource | An open-source natural language processing system for information extraction from electronic medical record clinical free-text. This is a system through which one creates one or more pipelines to process clinical notes and to identify clinical named entities. It processes clinical notes, identifying types of clinical named entities, drugs, diseases/disorders, signs/symptoms, anatomical sites and procedures. Each named entity that is found is given attributes for the text span, the ontology mapping code, the context (family history of, current, unrelated to patient), and negated/not negated. cTAKES is built on the UIMA framework. cTAKES 2.5 does not provide a GUI of its own for installation or processing. The cTAKES documentation shows how to use the GUIs provided by the UIMA framework, and how to run cTAKES from a command line. Before using cTAKES you need to know that cTAKES does not provide any mechanisms of its own to handle patient data securely. It is assumed that cTAKES is installed on a system that can process patient data, or that any data being processed by cTAKES has already been through a deidentification step in order to comply with any applicable laws. The tool has been developed and deployed at Mayo Clinic since early 2000. | natural language processing, information extraction, electronic medical record, medical record, clinical, free-text, annotation, unstructured information management architecture, uima |
is related to: Clinical and Translational Science Awards Consortium has parent organization: Mayo Clinic Minnesota; Minnesota; USA has parent organization: National Cancer Institute |
IBM UIMA ; SHARPn Strategic Health IT Advanced Research Projects Area 4: Secondary Use of EHR Data Cooperative Agreement from the HHS Office of the National Coordinator Washington DC DHHS 90TR000201 |
PMID:23286462 PMID:20819853 |
Open-source | nlx_152159 | https://wiki.nci.nih.gov/display/VKC/cTAKES+2.5 | SCR_006379 | cTAKES - clinical Text Analytics and Knowledge Extraction System, Clinical Text Analysis and Knowledge Extraction System | 2026-02-15 09:19:15 | 42 | ||||
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Johns Hopkins Point of Care Guides Resource Report Resource Website 1+ mentions |
Johns Hopkins Point of Care Guides (RRID:SCR_006314) | Johns Hopkins POC-IT Guides | software application, database, software resource, mobile app, data or information resource | Authoritative, need-to-know information from Johns Hopkins available for mobile devices and the web. Guides provide up to date information and break down details of diagnosis, drug indications, dosing, pharmacokinetics, side effects and interactions, pathogens, management, and vaccines into frequently-updated, quick-read entries. Available for infectious disease (ABX), diabetes, and HIV. | point of care, antibiotic, pathogen, infectious disease, drug, clinical test, management, complication, medication, clinical, infection, resistance | is related to: ABX Guide | Diabetes, Infectious disease, HIV | Available for purchase | nlx_151999 | SCR_006314 | Johns Hopkins Medicine POC-IT Guides, Johns Hopkins Guides: Antibiotic HIV and Diabetes Guides, POC-IT Guides | 2026-02-15 09:19:14 | 2 | ||||||
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PatientCrossroads Resource Report Resource Website 1+ mentions |
PatientCrossroads (RRID:SCR_006279) | PatientCrossroads | portal, people resource, data or information resource, topical portal, patient registry | A trusted third-party gatekeeper of patient data from participants in a rare disease ecosystem, collecting and managing the information in a scalable, cost-effective manner. Each patient registry provides critical disease knowledge which makes that disease easier to study, increasing the probability a treatment can be developed. PatientCrossroads takes a network approach to patient registry programs. Unlike companies that merely sell registry software, we offer a full range of administration, management, and genetic curation services. What does this consolidated, patient-centric approach to patient registries mean? * Patients can more easily find registries and provide their valuable data (including locations of blood and tissue samples as well as reports of diagnoses, disease symptoms, treatment usage, and lifestyle activities) * Patients can be confident in the privacy of their de-identified data and the knowledge that PatientCrossroads does not sell patient data * Researchers and pharmaceutical companies have a larger, more easily accessible pool of potential patients for research studies and clinical trials targeting specific rare diseases * Pharmaceutical companies can collect post-market surveillance data in a more scalable and cost-effective manner * Rare disease advocacy and research foundations can more easily organize their global patient populations for inclusion in trials and studies | disease, treatment, clinical, patient, registry, drug discovery, clinical trial, research study, genetics, biorepository | is parent organization of: NF Registry | Rare disease | nlx_151889 | SCR_006279 | Patient Crossroads | 2026-02-15 09:19:12 | 3 | |||||||
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Congress of Neurological Surgeons University of Neurosurgery Resource Report Resource Website |
Congress of Neurological Surgeons University of Neurosurgery (RRID:SCR_006309) | University of Neurosurgery | continuing medical education, portal, training resource, data or information resource, topical portal, short course | THIS RESOURCE IS NO LONGER IN SERVICE, documented on August 19,2021.Designed with the neurosurgeon in mind, this portal contains everything you need to acquire new skills and techniques, including courses, an image database, and the world''s largest neurosurgical wiki reference - NeuroWiki. The new University of Neurosurgery includes: * More than 40 new online courses - in all neurosurgical subspecialties. * Archived webinars. * Lectures from the CNS Annual Meetings. * Neurosurgical image database. We are continuing to add new content - check back often. | surgery, neurology, neurosurgery, anatomy, cerebrovascular, epilepsy, core competency, clinical, non-clinical, pain, tumor, trauma, spine, socio-economic, peripheral nerve, pediatric, webinar |
has parent organization: Congress of Neurological Surgeons is parent organization of: Congress of Neurological Surgeons Online Image Database |
THIS RESOURCE IS NO LONGER IN SERVICE | nif-0000-06717 | SCR_006309 | CNS University, CNS University of Neurosurgery | 2026-02-15 09:19:24 | 0 | |||||||
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NINDS Common Data Elements Resource Report Resource Website 10+ mentions |
NINDS Common Data Elements (RRID:SCR_006577) | NINDS CDEs | data or information resource, database, standard specification, narrative resource | The purpose of the NINDS Common Data Elements (CDEs) Project is to standardize the collection of investigational data in order to facilitate comparison of results across studies and more effectively aggregate information into significant metadata results. The goal of the National Institute of Neurological Disorders and Stroke (NINDS) CDE Project specifically is to develop data standards for clinical research within the neurological community. Central to this Project is the creation of common definitions and data sets so that information (data) is consistently captured and recorded across studies. To harmonize data collected from clinical studies, the NINDS Office of Clinical Research is spearheading the effort to develop CDEs in neuroscience. This Web site outlines these data standards and provides accompanying tools to help investigators and research teams collect and record standardized clinical data. The Institute still encourages creativity and uniqueness by allowing investigators to independently identify and add their own critical variables. The CDEs have been identified through review of the documentation of numerous studies funded by NINDS, review of the literature and regulatory requirements, and review of other Institute''s common data efforts. Other data standards such as those of the Clinical Data Interchange Standards Consortium (CDISC), the Clinical Data Acquisition Standards Harmonization (CDASH) Initiative, ClinicalTrials.gov, the NINDS Genetics Repository, and the NIH Roadmap efforts have also been followed to ensure that the NINDS CDEs are comprehensive and as compatible as possible with those standards. CDEs now available: * General (CDEs that cross diseases) Updated Feb. 2011! * Congenital Muscular Dystrophy * Epilepsy (Updated Sept 2011) * Friedreich''s Ataxia * Parkinson''s Disease * Spinal Cord Injury * Stroke * Traumatic Brain Injury CDEs in development: * Amyotrophic Lateral Sclerosis (Public review Sept 15 through Nov 15) * Frontotemporal Dementia * Headache * Huntington''s Disease * Multiple Sclerosis * Neuromuscular Diseases ** Adult and pediatric working groups are being finalized and these groups will focus on: Duchenne Muscular Dystrophy, Facioscapulohumeral Muscular Dystrophy, Myasthenia Gravis, Myotonic Dystrophy, and Spinal Muscular Atrophy The following tools are available through this portal: * CDE Catalog - includes the universe of all CDEs. Users are able to search the full universe to isolate a subset of the CDEs (e.g., all stroke-specific CDEs, all pediatric epilepsy CDEs, etc.) and download details about those CDEs. * CRF Library - (a.k.a., Library of Case Report Form Modules and Guidelines) contains all the CRF Modules that have been created through the NINDS CDE Project as well as various guideline documents. Users are able to search the library to find CRF Modules and Guidelines of interest. * Form Builder - enables users to start the process of assembling a CRF or form by allowing them to choose the CDEs they would like to include on the form. This tool is intended to assist data managers and database developers to create data dictionaries for their study forms. | common data element, neuroscience, clinical, human, adult, pediatric, disease, disorder, data standard | has parent organization: National Institute of Neurological Disorders and Stroke | NINDS contract N01-NS-7-2372 | PMID:20583225 | nif-0000-10000 | SCR_006577 | National Institute of Neurological Disorders and Stroke CDEs, NINDS NINDS Common Data Elements: Harmonizing information. Streamlining research. | 2026-02-15 09:19:18 | 27 | ||||||
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Influenza Research Database (IRD) Resource Report Resource Website 10+ mentions |
Influenza Research Database (IRD) (RRID:SCR_006641) | IRD | data analysis service, database, service resource, storage service resource, data repository, production service resource, data or information resource, analysis service resource | The Influenza Research Database (IRD) serves as a public repository and analysis platform for flu sequence, experiment, surveillance and related data. | avian, clinical, genomic, host, influenza, isolate, mammalian, nonhuman, phenotypic, preventive, proteomic, repository, strain, epitope, surveillance, treatment, virus, protein sequence, immune, 3d protein structure, align, blast, short peptide, flu protein, sequence variation, snp, phylogenetic tree, human, 3d spacial image, image, clinical data, clinical, genomic, proteomic, phenotype |
is recommended by: NIDDK Information Network (dkNET) is listed by: DataCite is listed by: re3data.org is listed by: FAIRsharing is related to: Los Alamos National Laboratory is related to: University of California at Davis; California; USA is related to: Sage Analytica is related to: J. Craig Venter Institute has parent organization: University of Texas Southwestern Medical Center; Texas; USA has parent organization: Los Alamos National Laboratory has parent organization: Sage Analytica |
Influenza virus, Influenza | NIAID | PMID:17965094 | Acknowledgement requested, The community can contribute to this resource | DOI:10.25504/FAIRsharing.ws7cgw, nif-0000-21222, DOI:10.35094, DOI:10.17616/R3S634, r3d100011558 | https://www.fludb.org/ https://doi.org/10.17616/R3S634 https://doi.org/10.17616/r3s634 https://doi.org/10.35094/ https://dx.doi.org/10.35094/ https://fairsharing.org/10.25504/FAIRsharing.ws7cgw https://doi.org/10.17616/R3S634 |
http://www.fludb.org/brc/home.do?decorator=influenza | SCR_006641 | , Influenza Research Database, IRD | 2026-02-15 09:19:32 | 28 | ||
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Autoimmunity Centers of Excellence Resource Report Resource Website |
Autoimmunity Centers of Excellence (RRID:SCR_006510) | ACE | portal, research forum portal, data or information resource, topical portal, disease-related portal, resource | Nine centers that conduct clinical trials and basic research on new immune-based therapies for autoimmune diseases. This program enhances interactions between scientists and clinicians in order to accelerate the translation of research findings into medical applications. By promoting better coordination and communication, and enabling limited resources to be pooled, ACEs is one of NIAID''''s primary vehicles for both expanding our knowledge and improving our ability to effectively prevent and treat autoimmune diseases. This coordinated approach incorporates key recommendations of the NIH Autoimmune Diseases Research Plan and will ensure progress in identifying new and highly effective therapies for autoimmune diseases. ACEs is advancing the search for effective treatments through: * Diverse Autoimmunity Expertise Medical researchers at ACEs include rheumatologists, neurologists, gastroenterologists, and endocrinologists who are among the elite in their respective fields. * Strong Mechanistic Foundation ACEs augment each clinical trial with extensive basic studies designed to enhance understanding of the mechanisms responsible for tolerance initiation, maintenance, or loss, including the role of cytokines, regulatory T cells, and accessory cells, to name a few. * Streamlined Patient Recruitment The cooperative nature of ACEs helps scientists recruit patients from distinct geographical areas. The rigorous clinical and basic science approach of ACEs helps maintain a high level of treatment and analysis, enabling informative comparisons between patient groups. | immune system, infection, clinical trial, clinical, basic research |
is listed by: NIDDK Information Network (dkNET) is listed by: NIDDK Research Resources |
Type 1 diabetes, Diabetes, Autoimmune disease, Systematic lupus erythematosus, Rheumatoid arthritis, Sjogren's syndrome, Multiple sclerosis, Chronic inflammatory bowel disease, Pemphigus vulgaris, Scleroderma | NIAID ; NIDDK ; NIH Office of Research on Womens Health |
nlx_152751 | SCR_006510 | 2026-02-15 09:19:17 | 0 | |||||||
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NIDDK Central Repository Resource Report Resource Website 50+ mentions |
NIDDK Central Repository (RRID:SCR_006542) | CDR, NIDDKCDR | database, service resource, storage service resource, data repository, data or information resource, biospecimen repository, material storage repository | NIDDK Central Repositories are two separate contract funded components that work together to store data and samples from significant, NIDDK funded studies. First component is Biorepository that gathers, stores, and distributes biological samples from studies. Biorepository works with investigators in new and ongoing studies as realtime storage facility for archival samples.Second component is Data Repository that gathers, stores and distributes incremental or finished datasets from NIDDK funded studies Data Repository helps active data coordinating centers prepare databases and incremental datasets for archiving and for carrying out restricted queries of stored databases. Data Repository serves as Data Coordinating Center and website manager for NIDDK Central Repositories website. | clinical supply resource, data, clinical, sample sharing, genotyping, genotype, phenotype, genetic analysis, data sharing, genetics, serum, plasma, stool, urine, dna, red blood cell, buffy coat, tissue, immortalized cell line, cell line, data set, digestive organ, kidney, diabetes, kidney disease, digestive disease, genome-wide association study, sequencing, FASEB list |
uses: DataCite is used by: NIDDK Information Network (dkNET) is used by: NIF Data Federation is used by: NIH Heal Project is recommended by: National Library of Medicine is recommended by: NIDDK Information Network (dkNET) is recommended by: NIDDK - National Institute of Diabetes and Digestive and Kidney Diseases lists: HEALTHY study lists: Nonalcoholic Steatohepatitis Clinical Research Network lists: HALT-C Trial lists: Type 1 Diabetes Genetics Consortium lists: TEDDY lists: Type 1 Diabetes TrialNet lists: Rare and Atypical Diabetes Network lists: Diabetes Prevention Program lists: Diabetes Prevention Program Outcomes Study lists: Restoring Insulin Secretion Consortium (RISE) lists: Epidemiology of Diabetes Interventions and Complications lists: Diabetes Control and Complications Trial lists: Treatment Options for type 2 Diabetes in Adolescents and Youth is listed by: One Mind Biospecimen Bank Listing is listed by: re3data.org is listed by: Biospecimens/Biorepositories: Rare Disease-HUB (RD-HUB) is listed by: NIDDK Information Network (dkNET) is related to: NCBI database of Genotypes and Phenotypes (dbGap) is related to: Peginterferon and Ribavirin for Pediatric Patients with Chronic Hepatitis C is related to: Chronic Renal Insufficiency Cohort Study has parent organization: RTI International |
NIDDK | PMID:23396299 PMID:21959867 PMID:16595012 |
Restricted | nlx_152673, r3d100010377 | https://doi.org/10.17616/R3WP48 | https://www.niddkrepository.org, | SCR_006542 | NIDDK Central Repository, National Institute of Diabetes and Digestive and Kidney Diseases Central Repository, NIDDKCentral Repositories | 2026-02-15 09:19:18 | 85 | |||
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CTE and Post-traumatic Neurodegeneration: Neuropathology and Ex Vivo Imaging Resource Report Resource Website 1+ mentions |
CTE and Post-traumatic Neurodegeneration: Neuropathology and Ex Vivo Imaging (RRID:SCR_006543) | CTE and Post-traumatic Neurodegeneration: Neuropathology and Ex Vivo Imaging | portal, research forum portal, data or information resource, topical portal, disease-related portal | Initiative to assemble a multicenter team of expert neuroscientists to evaluate the late effects of Traumatic brain injury (TBI), including single and repetitive TBI of varying severity, and Chronic Traumatic Encephalopathy (CTE), using histological examination of postmortem bio specimens and neuroimaging tools as a foundation to develop in vivo diagnostics. As a first aim, this proposal will bring together a team of 5 accomplished neuropathologists in neurodegenerative disease to establish consensus criteria for the post-mortem diagnosis of CTE. This team will also define the stages of CTE pathology, the features that differentiate CTE from other neurodegenerations and the effects of substance abuse, and the characteristics of posttraumatic neurodegeneration after single TBI. As a second aim, this proposal will establish a national bio specimen and data bank for TBI (Understanding Neurological Injury and Traumatic Encephalopathy (UNITE) bio bank) by developing a nationwide brain donor registry and hotline to acquire high quality bio specimens and data. The UNITE bank will use strictly standardized protocols and a web-based interface to ensure that tissue and data are readily available to qualified investigators. Comprehensive retrospective clinical data including clinical symptoms, brain trauma and substance abuse history, and medical records (including common data elements) will be entered into a secure database. Behavioral/ mood dysfunction, cognitive changes, substance abuse and traumatic exposure will be correlated with quantitative assessment of the multifocal tauopathy, Ass deposition and axonal injury. As a third aim, neuroimaging signatures of the neuropathology will be determined in post-mortem tissue using high spatial resolution diffusion tensor imaging (DTI) and autoradiography using a highly selective PET ligand for tau. Quantitative assessment of axonal injury, tau, and Ass will be correlated with ex vivo DTI abnormalities and tau ligand autoradiography. Pilot neuroimaging studies of individuals at high risk for the development of CTE will also be conducted in the final 2 years of the proposal. This proposal will determine the clinical and neuroimaging correlates of CTE and posttraumatic neurodegeneration and create the groundwork for establishing their incidence and prevalence. This study will have a tremendous impact on public health of millions of Americans and greatly increase our understanding of the latent effects of brain trauma. | brain bank, biospecimen repository, neuroimaging, brain, neuropathology, dti, pet, clinical, cognitive decline, dementia, axonal injury, aggregated protein, neurodegeneration, post-mortem, incidence, prevalence, risk factor, clinical course, treatment, diagnosis, biomarker | has parent organization: Boston University School of Medicine; Massachusetts; USA | Traumatic brain injury, Chronic traumatic encephalopathy | nlx_156786 | SCR_006543 | Chronic Traumatic Encephalopathy and Post-traumatic Neurodegeneration: Neuropathology and Ex Vivo Imaging | 2026-02-15 09:19:30 | 1 | |||||||
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Leiden Open Variation Database Resource Report Resource Website 100+ mentions |
Leiden Open Variation Database (RRID:SCR_006566) | LOVD | software application, database, data processing software, software resource, service resource, storage service resource, data repository, data storage software, data or information resource | Freely available tool for Gene-centered collection and display of DNA variations. It also provides patient-centered data storage and storage of Next Generation Sequencing (NGS) data, even of variants outside of genes. Please note that LOVD provides a system for storage of information on genes and allelic variants. To obtain information about any genes or variants, do not download the LOVD package. This information should be obtained from the respective databases, http://www.lovd.nl/2.0/index_list.php In total: 2,507,027 variants (2,208,937 unique) in 170,935 individuals in 62619 genes in 88 LOVD installations. (Aug. 2013) LOVD 3.0 shared installation, http://databases.lovd.nl/shared/genes To maintain a high quality of the data stored, LOVD connects with various resources, like HGNC, NCBI, EBI and Mutalyzer. You can download LOVD in ZIP and GZIPped TARball formats. | genetic variation, genomic variant, gene, transcript, disease, next generation sequencing, dna variation, variant, clinical, screening, locus, phenotype, sequence variation, allelic variant, data sharing, FASEB list |
is listed by: OMICtools has parent organization: Leiden University; Leiden; Netherlands |
European Union FP7 GEN2PHEN 200754 | PMID:21520333 PMID:15977173 |
The community can contribute to this resource, Clearance to contribute required, GNU General Public License, Acknowledgement requested | nif-0000-02998, OMICS_00275, r3d100011905 | https://doi.org/10.17616/R3993T | SCR_006566 | Leiden Open Variation Database (LOVD) | 2026-02-15 09:19:18 | 238 |
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