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http://www.project-redcap.org/
Web application that allows users to build and manage online surveys and databases. Using REDCap's stream-lined process for rapidly developing projects, you may create and design projects using 1) the online method from your web browser using the Online Designer; and/or 2) the offline method by constructing a "data dictionary" template file in Microsoft Excel, which can be later uploaded into REDCap. Both surveys and databases (or a mixture of the two) can be built using these methods. REDCap provides audit trails for tracking data manipulation and user activity, as well as automated export procedures for seamless data downloads to Excel, PDF, and common statistical packages (SPSS, SAS, Stata, R). Also included are a built-in project calendar, a scheduling module, ad hoc reporting tools, and advanced features, such as branching logic, file uploading, and calculated fields. REDCap has a quick and easy software installation process, so that you can get REDCap running and fully functional in a matter of minutes. Several language translations have already been compiled for REDCap (e.g. Chinese, French, German, Portuguese), and it is anticipated that other languages will be available in full versions of REDCap soon. The REDCap Shared Library is a repository for REDCap data collection instruments and forms that can be downloaded and used by researchers at REDCap partner institutions.
Proper citation: REDCap (RRID:SCR_003445) Copy
Project exploring the spectrum of genomic changes involved in more than 20 types of human cancer that provides a platform for researchers to search, download, and analyze data sets generated. As a pilot project it confirmed that an atlas of changes could be created for specific cancer types. It also showed that a national network of research and technology teams working on distinct but related projects could pool the results of their efforts, create an economy of scale and develop an infrastructure for making the data publicly accessible. Its success committed resources to collect and characterize more than 20 additional tumor types. Components of the TCGA Research Network: * Biospecimen Core Resource (BCR); Tissue samples are carefully cataloged, processed, checked for quality and stored, complete with important medical information about the patient. * Genome Characterization Centers (GCCs); Several technologies will be used to analyze genomic changes involved in cancer. The genomic changes that are identified will be further studied by the Genome Sequencing Centers. * Genome Sequencing Centers (GSCs); High-throughput Genome Sequencing Centers will identify the changes in DNA sequences that are associated with specific types of cancer. * Proteome Characterization Centers (PCCs); The centers, a component of NCI's Clinical Proteomic Tumor Analysis Consortium, will ascertain and analyze the total proteomic content of a subset of TCGA samples. * Data Coordinating Center (DCC); The information that is generated by TCGA will be centrally managed at the DCC and entered into the TCGA Data Portal and Cancer Genomics Hub as it becomes available. Centralization of data facilitates data transfer between the network and the research community, and makes data analysis more efficient. The DCC manages the TCGA Data Portal. * Cancer Genomics Hub (CGHub); Lower level sequence data will be deposited into a secure repository. This database stores cancer genome sequences and alignments. * Genome Data Analysis Centers (GDACs) - Immense amounts of data from array and second-generation sequencing technologies must be integrated across thousands of samples. These centers will provide novel informatics tools to the entire research community to facilitate broader use of TCGA data. TCGA is actively developing a network of collaborators who are able to provide samples that are collected retrospectively (tissues that had already been collected and stored) or prospectively (tissues that will be collected in the future).
Proper citation: The Cancer Genome Atlas (RRID:SCR_003193) Copy
Consortium to address the increasing demand by researchers for quality-controlled, disease-relevant research grade induced Pluripotent Stem Cell (iPSC) lines, data and cell services by demonstrating an operational banking and distribution service of iPSC lines after 3 years and establishing subsequently for Europe a centralized, not-for-profit bank providing all qualified users with access to scalable, cost-efficient and customized products. The main facility will be at the Babraham Research Campus (Cambridge, UK) and will undertake cell expansion, QC and characterization. The European Cell Culture Collection (ECACC) of Public Health England (Department of Health, UK) will coordinate cell line distribution. The Fraunhofer IBMT (Saarbr��cken, Germany) will provide comprehensive operational back up. In a phased business strategy EBiSC will hot-start distribution of lines contributed by iPSC Centres in 2014, lines collected based on specified user demand, will reach full scale operations in 2016, and with extended funding will become self-sustaining as a not for profit banking operation by 2019. EBiSC will spearhead Europe in the international standardization of iPSC banking by forging collaborative links with similar endeavors in the USA and Asia. It will also provide training to encourage adoption and use of the bank. The project has up to one year after completion to disseminate intellectual property or data created by the project.
Proper citation: EBiSC (RRID:SCR_003856) Copy
A virtual biospecimen registry designed to support and facilitate basic science, clinical, and translational research that will advance understanding of mesothelioma pathophysiology with the goal of expediting the discovery of preventive measures, novel therapeutic interventions, and ultimately, cures for mesothelioma. The NMVB resource is designed to provide mesothelioma tissue samples with high-quality and well-characterized multimodal annotated data to researchers. The NMVB team strongly believes that progress in translational and clinical research - in cancer as well as other disease areas - depends on the ability of researchers to access high-quality tissue that is associated with meaningful annotation. MVB database version 3.0 has been released that provides researchers real-time access to demographic, epidemiologic, pathologic, genotype, and follow-up data associated with biospecimens at no cost. Researchers interested in utilizing NMVB samples for their research may submit an application. All researchers (academic or commercial, United States or foreign) may apply for NMVB tissue specimens. NMVB currently has 966 annotated cases and 1198 biospecimens including: * Paraffin Embedded Tissue * Fresh Frozen Tissue * Blood and DNA Samples The NMVB also has developed mesothelioma tissue microarrays (TMAs) with associated multimodal data annotation. Additional TMAs will be available shortly.
Proper citation: National Mesothelioma Virtual Bank (RRID:SCR_003438) Copy
http://www.kcl.ac.uk/medicine/research/divisions/diiid/centres/pii/biobank/index.aspx
Centralized specimen archiving and molecular analysis facility that assists researchers wishing to undertake cohort-based projects in areas such HIV/AIDS, HCV infection or MRSA. Its aim is to make medical research easier, more efficient and faster to perform. The IDB collects valuable clinical samples from patients with infections who are attending their partner NHS-Trust clinics. Their core collections include blood samples from patients infected with human immunodeficiency virus (HIV), hepatitis B (HBV) & hepatitis C (HCV) viruses or methicillin resistant Staphylococcus aureus (MRSA). Blood samples are separated so that patients������?? DNA, plasmas (cell-free blood) and lymphocytes (white blood cells) can be frozen into a comprehensive library. Medical researchers can access complete sets of samples to answer important clinical questions, if their research project is approved by the IDB''s Management Committee. For this reason they are actively recruiting ''medically interesting'' patients who are infected with HIV, for example: those who remain well ������?? despite being infected for many years; others who are exposed to HIV but remain uninfected; others who develop AIDS very quickly; and, those who are in the process of sero-converting.
Proper citation: Kings College London Infectious Diseases BioBank (RRID:SCR_004827) Copy
http://www.tmf-ev.de/BiobankenRegisterEN/Registry.aspx?udt_2021_param_detail=72
It is the aim of the SepNet initiative to establish a central facility, essential to data and sample quality and homogeneity, that comprises a structured and easily accessible sample bank with probes of homogeneous quality originating from a well-characterized patient population enrolled in independent, innovative and internationally competitive prospective clinical sepsis trials. The SepNetBiobank is a core facility of SepNet. The object of this central sample resource is to organize and handle all relevant aspects of sampling, storage and delivery of samples in the SepNet collaboration to ensure homogeneity of the samples in terms of specimen quality and maintaining sampling standards. This will be achieved through central handling of samples collected in peripheral nationwide 17 regional centers and an additional 36 associated centers according to an agreed sampling scheme and pre-set standards for sample quality, sample handling and banking; quality assurance and all relevant parts of sample handling will be in the hands of the core unit, minimizing pre-analytical steps in the heterogeneous environment of the different regional centers. In the next few months a fully automated sample storage system will be implemented that allows handling of more than 200.000 individual aliquots expected after completion of the different ongoing and planned SepNet Trails. In the next six months a fully automated -80 degree C sample storage system will be implemented. After completion of the plannend and ongoing SepNet trials more than 59.710 expected primary samples (218.040 aliquots) will be stored in this system. This outstanding sample resource will provide the basis for scientific projects aming at improving patient care with sepsis e.g. advancement in diagnostics, risk stratification, therapy and outcome.
Proper citation: SepNet Central Sample Bank (RRID:SCR_004543) Copy
Collects and stores genetic (DNA) samples along with associated healthcare information from patients of Northwestern-affiliated hospitals and clinics. This resource is available to scientists to conduct groundbreaking genetic research. The information and blood samples provided will be used by researchers to examine the role genes play in the development and treatment of common diseases. The NUgene Project seeks to increase the understanding of genetic mechanisms underlying common diseases, assist in the development of DNA-based technology for diagnosis and treatment of disease, and aid physicians and other healthcare providers in the application of genetics to the practice of medicine. NUgene participants are recruited throughout the Northwestern-affiliated healthcare community in order to create an ethnically and medically diverse population for research. Participants must be 18 years of age or older and receive their medical care from a Northwestern-affiliated provider, regardless of health status. Consenting individuals complete all aspects of enrollment in a single meeting with a research coordinator. The enrollment process includes the donation of a single sample of blood and the completion of a self-administered questionnaire. Participants also sign a consent form during this encounter. The NUgene Project is an interdisciplinary project that relies on the expertise of individuals working in a variety of fields, including science, medicine, clinical research, statistics, epidemiology, and computational biology. NUgene''s multidisciplinary approach has spurred collaborations within Northwestern-affiliated institutions and with other outside institutions. This collaboration of ideas is the future of genetics and genomic research., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.
Proper citation: NUgene Project (RRID:SCR_007426) Copy
http://ki.se/ki/jsp/polopoly.jsp?d=29328&a=30572&l=en
THIS RESOURCE IS NO LONGER IN SERVCE, documented September 2, 2016.
Proper citation: KI Biobank - NOAK (RRID:SCR_006008) Copy
Database and biorepository from a multi-site, multi-disciplinary study characterizing the familial transmission of alcoholism and related phenotypes and identifying susceptibility genes using genetic linkage. Investigators have assembled a collection of over 300 extended families densely affected by alcoholism (more than 3000 individuals), including clinical, neuropsychological, electrophysiological, biochemical, and genetic data, and established a repository of immortalized cell lines from these individuals, to serve as a permanent source of DNA for genetic studies. NIAAA has funded the Collaborative Studies on Genetics of Alcoholism (COGA) since 1989, with the goal of identifying the specific genes underlying this vulnerability. Data and biomaterials are available to qualified investigators in the broader scientific community. Recipients of data and biomaterials will be responsible for defraying the cost of their distribution. Pedigrees densely affected with alcoholism (DSM-III-R) have been ascertained at six sites (SUNY Downstate Health Sciences Center, University of Connecticut, Indiana University, Washington University, University of Iowa, and The University of California at San Diego). Diagnoses of alcohol dependence according to several diagnostic systems (e.g., DSM-III-R, Feighner, ICD-10) are made based on examination of medical records and direct assessment using the Semi-Structured Assessment for Genetics of Alcoholism (SSAGA). Nuclear and extended pedigrees containing at least two alcohol-dependent first-degree relatives in addition to an alcohol dependent proband (with all affected individuals meeting both DSM-IIIR and Feighner criteria) have been ascertained. Clinical data comprises anonymous data on family structure, age, sex, vital status, psychopathology, diagnosis, other clinically relevant information, are stored, maintained, and distributed by Washington University. Research data, consist of data on blood biochemistry and psychological test performance, which are stored, maintained, and distributed by Washington University, and brain electrophysiological data, which are stored, maintained, and distributed by SUNY. Genetic analysis data, consisting of marker genotypes, along with results of previous genetic analyses of COGA data, are stored, maintained, and distributed by Washington University. Biomaterials, consisting of lymphoblastoid cell lines and DNA from participating subjects are stored, maintained, and distributed by Rutgers University. Researchers may gain access to clinical data, research data, genetic analysis data, and biomaterials, subject to NIAAA approval, by completing an application details available from the website. After access certification, the principal investigator will be given access to electronic data files and other documentation.
Proper citation: Collaborative Studies on Genetics of Alcoholism (RRID:SCR_006841) Copy
An observational longitudinal clinical study partnership to identify and validate biomarkers of Parkinson disease (PD) progression and provide easy and open web-based access to the comprehensive set of correlated clinical data and biospecimens, information, and biosamples acquired from PD and age and gender matched healthy control subjects to the research community. The data and specimens have been collected in a standardized manner under strict protocols and includes clinical (demographic, motor and non-motor, cognitive and neurobehavioral), imaging (raw and processed MRI, SPECT and DAT), and blood chemistry and hematology subject assessments and biospecimen inventories (serum, plasma, whole blood, CSF, DNA, RNA and urine). All data are de-identified to protect patient privacy. PPMI will be carried out over five years at 21 clinical sites in the United States and Europe and requires the participation of 400 Parkinson's patients and 200 control participants. The PPMI database provides researchers with access to correlated clinical and imaging data, along with annotated biospecimens, all available within an open access system that encourages data sharing (http://www.ppmi-info.org/access-data-specimens/). The website hosts an Ongoing Analysis section to keep the scientific community apprised of analyses being completed, in hopes of stimulating collaborations between researchers who are using PPMI data and specimens.
Proper citation: Parkinson's Progression Markers Initiative (RRID:SCR_006431) Copy
Company provides laboratories worldwide with analytical instruments and supplies, clinical and diagnostic testing services, consumables, applications and expertise in life sciences and applied chemical markets.
Proper citation: Agilent Technologies (RRID:SCR_013575) Copy
An academic-business-clinical partnership that sponsors research programs focused on the development of next-generation biomedical diagnostic devices. They aim to transform healthcare by pioneering advances in the science and technology of diagnostics and by translating these advances into clinical use. Building on key scientific insights, the BDI will now apply its established capabilities to create integrated Point-of-Care solutions, which will have major impacts on diagnosing disease and sustaining human health.
Proper citation: Biomedical Diagnostics Institute (RRID:SCR_004022) Copy
Center that aims to provide an environment to support biomedical research directed towards human health issues and nonhuman primate health and biology. To meet this mission, the WaNPRC supports biomedical research activities, professional research staff, specifically bred and maintained nonhuman primate colonies, and dedicated facilities and equipment required for nonhuman primate research protocols.
Proper citation: Washington National Primate Research Center (RRID:SCR_002761) Copy
Databases of transcript and media data collected from conversations with adults and older children to foster fundamental research in the study of human and animal communication. Conversations with children are available from CHILDES. All of the data is transcribed in CHAT and CA/CHAT formats. Databases of the following types are included in the collection: Aphasia patient speech, Child speech, Study of Phonological Development, Conversation Analysis, and Bilingualism and Second Language Acquisition. TalkBank will use these databases to advance the development of standards and tools for creating, sharing, searching, and commenting upon primary materials via networked computers.
Proper citation: TalkBank (RRID:SCR_003242) Copy
Non-profit biomedical research organization developing predictors of disease and accelerating health research through creation of open systems, incentives, and standards. Formed to coordinate and link academic and commercial biomedical researchers through Commons that represents new paradigm for genomics intellectual property, researcher cooperation, and contributor evolved resources.
Proper citation: Sage Bionetworks (RRID:SCR_003384) Copy
A center that works with the Oregon Alzheimer's Disease Center's Data Core, and collects and stores tissue samples, family history and genotype data of various populations. These include samples and data from subjects from the following sources: OADC clinical studies, the Oregon Brain Aging Study, the Community Brain Donor Program, the Preventing Cognitive Decline with Alternative Therapies program (informally called the Dementia Prevention Study or DPS), the African American Dementia and Aging Project, and the Klamath Exceptional Aging Project. The collected data samples include genomic DNA, lymphoblast cell lines, genome-wide and candidate region SNP marker data, APOE, AD candidate gene markers.
Proper citation: Layton Center Biomarkers and Genetics (RRID:SCR_008824) Copy
http://www.framinghamheartstudy.org/
A longitudinal, epidemiologic study to identify the common risk factors or characteristics that contribute to cardiovascular disease by following its development over a long period of time in a large group of participants who had not yet developed overt symptoms or suffered a heart attack or stroke. Since that time the FHS has studied three generations of participants resulting in biological specimens and data from nearly 15,000 participants. Since 1994, two groups from minority populations, including related individuals have been added to the FHS. FHS welcomes proposals from outside investigators for data and biospecimens. The researchers recruited 5,209 men and women between the ages of 30 and 62 from the town of Framingham, Massachusetts, and began the first round of extensive physical examinations and lifestyle interviews that they would later analyze for common patterns related to CVD development. Since 1948, the subjects have continued to return to the study every two years for a detailed medical history, physical examination, and laboratory tests, and in 1971, the Study enrolled a second generation - 5,124 of the original participants'''' adult children and their spouses - to participate in similar examinations. In 1994, the need to establish a new study reflecting a more diverse community of Framingham was recognized, and the first Omni cohort of the Framingham Heart Study was enrolled. In April 2002 the Study entered a new phase, the enrollment of a third generation of participants, the grandchildren of the Original Cohort. In 2003, a second group of Omni participants was enrolled. Over the years, careful monitoring of the Framingham Study population has led to the identification of major CVD risk factors, as well as valuable information on the effects of these factors such as blood pressure, blood triglyceride and cholesterol levels, age, gender, and psychosocial issues. Risk factors for other physiological conditions such as dementia have been and continue to be investigated. In addition, the relationships between physical traits and genetic patterns are being studied. FHS clinical and research data is stored in the dbGaP and NHLBI Repository repositories and may be accessed by application. Please check the following repositories before applying for data through FHS. Investigators seeking data that is not available through dbGaP or BioLINCC or seeking biological specimens may submit a proposal through the FHS web-based research application. The FHS data repository may be accessed through this FHS website, under the For Researchers link, then Description of Data, in order to determine if and how the desired data is stored. Proposals may involve the use of existing data, the collection of new data, either directly from participants or from previously collected samples, images, or other materials (e.g., medical records). The FHS Repository also has biological specimens available for genetic and non-genetic research proposals. Specimens include urine, blood and blood products, as well as DNA.
Proper citation: Framingham Heart Study (RRID:SCR_008963) Copy
A workflow-oriented environment focused on biomedical image computing and simulation. The open source framework is extensible through plug-ins and is focused on building research and clinical software prototypes. Gimias has been used to develop clinical prototypes in the fields of cardiac imaging and simulation, angiography imaging and simulation, and neurology.
Proper citation: GIMIAS (RRID:SCR_009545) Copy
Center for mutant mouse research and distribution. The objectives of the JAX MMRRC are to: identify and evaluate biomedically-significant mice, import/acquire and archive mouse strains, distribute mouse strains, and operate a control program to ensure genetic stability.
Proper citation: Mutant Mouse Resource and Research Center - Jackson Laboratory (RRID:SCR_016446) Copy
https://github.com/rbutleriii/Clinotator
Software that performs clinical interpretation of ambiguous ClinVar annotations. This software takes batches of variants as input and queries NCBI eutilities to generate scoring metrics.
Proper citation: Clinotator (RRID:SCR_016054) Copy
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