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http://www.nkdep.nih.gov/lab-evaluation/gfr-calculators.shtml
Glomerular Filtration Rate (GFR) calculators to estimate kidney function for adults (MDRD GFR Calculator) and children (Schwartz GFR Calculator). In adults, the recommended equation for estimating glomerular filtration rate (GFR) from serum creatinine is the Modification of Diet in Renal Disease (MDRD) Study equation. The IDMS-traceable version of the MDRD Study equation is used. Currently the best equation for estimating glomerular filtration rate (GFR) from serum creatinine in children is the Bedside Schwartz equation for use with creatinine methods with calibration traceable to IDMS. Using the original Schwartz equation with a creatinine value from a method with calibration traceable to IDMS will overestimate GFR.
Proper citation: Glomerular Filtration Rate Calculators (RRID:SCR_006443) Copy
An open source data sharing and visualization platform for neuroimaging data, that uses the OntoNeuroLOG ontology. Shanoir (Sharing NeurOImaging Resources) is an open source neuroinformatics platform designed to share, archive, search and visualize neuroimaging data. It provides a user-friendly secure web access and offers an intuitive workflow to facilitate the collecting and retrieving of neuroimaging data from multiple sources and a wizard to make the completion of metadata easy. Shanoir comes with many features such as anonymization of data, support for multicenter clinical studies on subjects or group of subjects. Shanoir offers an ontology-based data organization (OntoNeuroLOG). Among other things, this facilitates the reuse of data and metadata, the integration of processed data and provides traceability trough an evolutionary approach. Shanoir allows researchers, clinicians, PhD students and engineers to undertake quality research projects with an emphasis on remote collaboration. As a secured J2EE web application, it therefore allows you safely store and archive, with no more requirements than a computer with an internet connection. Furthermore, Shanoir is not only a web application: it is also a complete neuroinformatics platform in which you can easily integrate your existing processing tools or develop your own ones: see ShanoirTk. Shanoir is a project carried out by the VisAGeS Team, based at IRISA (INRIA Rennes - Bretagne Atlantique Research Centre). This software is released under QPL 1.0 license.
Proper citation: Shanoir (RRID:SCR_006286) Copy
http://www.nkdep.nih.gov/lab-evaluation/gfr/creatinine-standardization.shtml
Standard specification to reduce inter-laboratory variation in creatinine assay calibration and therefore enable more accurate estimates of glomerular filtration rate (eGFR). Created by NKDEP''''s Laboratory Working Group in collaboration with the International Federation of Clinical Chemistry and Laboratory Medicine (IFCC) and the European Communities Confederation of Clinical Chemistry (now called the European Federation of Clinical Chemistry and Laboratory Medicine), the effort is part of a larger NKDEP initiative to help health care providers better identify and treat chronic kidney disease in order to prevent or delay kidney failure and improve patient outcomes. Recommendations are intended for the USA and other countries or regions that have largely completed standardization of creatinine calibration to be traceable to an isotope dilution mass spectrometry (IDMS) reference measurement procedure. The program''''s focus is to facilitate the sharing of information to assist in vitro diagnostic manufacturers, clinical laboratories, and others in the laboratory community with calibrating their serum creatinine measurement procedures to be traceable to isotope dilution mass spectrometry (IDMS). The program also supports manufacturers'''' efforts to encourage their customers in the laboratory to coordinate use of standardized creatinine methods with implementation of a revised GFR estimating equation appropriate for use with standardized creatinine methods. Communication resources and other information for various segments of the laboratory community are available in the Creatinine Standardization Recommendations section of the website. Also available is a protocol for calibrating creatinine measurements using whole blood devices. The National Institute for Standards and Technology (NIST) released a standard reference material (SRM 967 Creatinine in Frozen Human Serum) for use in establishing calibrations for routine creatinine measurement procedures. SRM 967 was validated to be commutable with native serum samples for many routine creatinine procedures and is useful to establish or verify traceability to an IDMS reference measurement procedure. Establishing calibrations for serum creatinine methods using SRM 967 not only provides a mechanism for ensuring more accurate measurement of serum creatinine, but also enables more accurate estimates of GFR. For clinical laboratories interested in independently checking the calibration supplied by their creatinine reagent suppliers/manufacturers, periodic measurement of NIST SRM 967 should be considered for inclusion in the lab''''s internal quality assurance program. To learn more about SRM 967, including how to purchase it, visit the NIST website, https://www-s.nist.gov/srmors/quickSearch.cfm
Proper citation: Creatinine Standardization Program (RRID:SCR_006441) Copy
http://aws.amazon.com/datasets
A multidisciplinary repository of public data sets such as the Human Genome and US Census data that can be seamlessly integrated into AWS cloud-based applications. AWS is hosting the public data sets at no charge for the community. Anyone can access these data sets from their Amazon Elastic Compute Cloud (Amazon EC2) instances and start computing on the data within minutes. Users can also leverage the entire AWS ecosystem and easily collaborate with other AWS users. If you have a public domain or non-proprietary data set that you think is useful and interesting to the AWS community, please submit a request and the AWS team will review your submission and get back to you. Typically the data sets in the repository are between 1 GB to 1 TB in size (based on the Amazon EBS volume limit), but they can work with you to host larger data sets as well. You must have the right to make the data freely available.
Proper citation: Amazon Web Services Public Data Sets (RRID:SCR_006318) Copy
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.
Proper citation: Johns Hopkins Point of Care Guides (RRID:SCR_006314) Copy
Online catalog of human genes and genetic disorders, for clinical features, phenotypes and genes. Collection of human genes and genetic phenotypes, focusing on relationship between phenotype and genotype. Referenced overviews in OMIM contain information on all known mendelian disorders and variety of related genes. It is updated daily, and entries contain copious links to other genetics resources.
Proper citation: OMIM (RRID:SCR_006437) Copy
http://www.patientcrossroads.com/
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
Proper citation: PatientCrossroads (RRID:SCR_006279) Copy
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.
Proper citation: Congress of Neurological Surgeons University of Neurosurgery (RRID:SCR_006309) Copy
http://www.nimh.nih.gov/educational-resources/index.shtml
A portal to educational resources.
Proper citation: NIMH Educational Resources (RRID:SCR_004045) Copy
Organization that established credentialing mechanisms to promote patient safety and to improve the quality of care provided to nephrology patients. There is a diversity of examinations providing the opportunity for certification at various levels of education, experience, and areas of practice within nephrology nursing. All of the certification examinations are endorsed by American Nephrology Nurses'''' Association (ANNA). The Commission recognizes the value of education, administration, research, and clinical practice in fostering personal and professional growth and currently provides six examinations to validate clinical performance: * The Certified Dialysis Nurse examination * The Certified Dialysis LPN/LVN examination * The Certified Nephrology Nurse examination * The Certified Clinical Hemodialysis Technician * The Certified Clinical Hemodialysis Technician - Advanced * The Certified Nephrology Nurse - Nurse Practitioner
Proper citation: Nephrology Nursing Certification Commission (RRID:SCR_003994) Copy
A nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD). RSN strives to help patients develop their personal coping skills, special talents, and employability by educating and empowering them and their family members to take control of the course and management of the disease. RSN plays a vital role in providing lawmakers and policymakers with the patient''s perspective on the needs and capabilities of people with CKD.
Proper citation: Renal Support Network (RRID:SCR_004049) Copy
Nonprofit organization committed exclusively to support research seeking the cause of the potentially debilitating kidney disease Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome, improve treatment and find a cure. NephCure Kidney International is: * Committed to funding research around the globe that will continue to move us closer to an improved treatment and a cure. * The primary source of information on Nephrotic Syndrome and FSGS. * Leading the charge for legislative action to provide more federal funding for research into Nephrotic Syndrome and FSGS. * Working to attract researchers to this field. * Educating the public and raising awareness about Nephrotic Syndrome and FSGS.
Proper citation: NephCure Kidney International (RRID:SCR_003993) Copy
A nationwide, non-profit, patient-led organization with membership open only to dialysis and pre-dialysis patients and their families working to improve the quality of life for all dialysis patients through education and advocacy. They are dedicated to developing awareness of dialysis issues, advocating for dialysis patients, promoting favorable public policy and improving the partnership between patients and caregivers. Their policies and their mission are guided solely by their membership.
Proper citation: Dialysis Patient Citizens (RRID:SCR_003981) Copy
http://www.chargeconsortium.com/
Consortium formed to facilitate genome-wide association study meta-analyses and replication opportunities among multiple large and well-phenotyped longitudinal cohort studies. A bibliography of CHARGE publications is available. Its founding member cohorts include: * Age, Gene, Environment, Susceptibility Study -- Reykjavik * Atherosclerosis Risk in Communities Study * Cardiovascular Health Study * Framingham Heart Study * Rotterdam Study Additional core cohorts include: * Coronary Artery Risk Development in Young Adults * Family Heart Study * Health, Aging, and Body Composition Study * Jackson Heart Study * Multi-Ethnic Study of Atherosclerosis
Proper citation: Cohorts for Heart and Aging Research in Genomic Epidemiology (RRID:SCR_004034) Copy
http://www.braintumourbank.ca/pages/about.html
THIS RESOURCE IS NO LONGER IN SERVICE, documented May 10, 2017. The mission of the Canadian Virtual Brain Tumour Bank (CVBTB) is to facilitate clinical, molecular and translational research through the provision of well-characterized tissue linked to clinical data and to become a standardized national tissue resource whereby scientific needs are met, addressed and accelerated through a common public accessible core the CVBTB. Recognizing the need to encourage systemic banking of brain tumor tissues throughout the country and to link banks of brain tumor tissue samples with academic and scientific institutions that require these samples, the CVBTB was established. Under the sponsorship of Schering Plough Canada Inc. and in association with the Canadian Brain Tumour Consortium (CBTC), the CVBTB looks to act as a resource for all researchers to provide them with information on the types of brain tumor tissue samples available and to direct them to the tumor tissue banking sites holding these samples. The CVBTB also looks to provide information on standard operating procedures regarding aspects of tumor tissue banking such as tissue accrual, storage and shipment and the processing of blood samples such as serum and lymphocytes. The CVBTB currently consists of four brain tumour tissue banking sites (Toronto Western Hospital - Toronto, Ontario; London Health Sciences Centre - London, Ontario; McGill University - Montreal, Quebec; University of Calgary - Calgary, Alberta) and is continuously looking for more institutions to be a part of the CVBTB. If your institution would like to become a part of the CVBTB, please contact the CVBTB coordinator.
Proper citation: Canadian Virtual Brain Tumour Bank (RRID:SCR_004221) Copy
Organization founded to meet a growing, urgent need for streamlining clinical trials that brings together an online network of clinical trial sites, the leading investigator identification and start-up platform, the industry''s best trial optimization system, and the leading grants payment capabilities to transform the way drug developers find, engage and pay doctors to run clinical trials. Specialties include: Site Identification, Protocol Feasibility, Building Investigator Communities, Site Startup, Investigator Payments, Contracts and Essential Documents, Investigator Budget Development
Proper citation: DrugDev (RRID:SCR_004064) Copy
http://www.transformproject.eu/portfolio-item/d6-2-clinical-research-information-model/
A clinical research information model for the integration of clinical research covering randomized clinical trials (RCT), case-control studies and database searches into the TRANSFoRm application development. TRANSFoRm clinical research is based on primary care data, clinical data and genetic data stored in databases and electronic health records and employs the principle of reusing primary care data, adapting data collection by patient reported outcomes (PRO) and eSource based Case Report Forms. CRIM was developed using the TRANSFoRm clinical use cases of GORD and Diabetes. Their use case driven approach consisted of three levels of modelling drawing heavily on the clinical research workflow of the use cases. Different available information models were evaluated for their usefulness to represent TRANSFoRm clinical research, including for example CTOM of caBIG, Primary Care Research Object Model (PRCOM) of ePCRN and BRIDG of CDISC. The PCROM model turned out to be the most suitable and it was possible to extend and modify this model with only 12 new information objects, 3 episode of care related objects and 2 areas to satisfy all requirements of the TRANSFoRm research use cases. Now the information model covers Good Clinical Practice (GCP) compliant research, as well as case control studies and database search studies, including the interaction between patient and GP (family doctor) during patient consultation, appointment, screening, patient recruitment and adverse event reporting.
Proper citation: TRANSFoRm Clinical Research Information Model (RRID:SCR_003889) Copy
Atlas of developing human brain for studying transcriptional mechanisms involved in human brain development. One of the BrainSpan datasets, Exon microarray summarized to genes, is presented. It is a downloadable archive of files containing normalized RNA-Seq expression values for analysis.
Proper citation: BrainSpan (RRID:SCR_004219) Copy
Service that extracts and analyzes methodological information from thousands of published studies across the functional neuroimaging literature. It currently offers searching articles by methodological choices, visualization of methods trends over time, and extraction of methods information from text. It currently includes 282,476 methodological details about 21,562 articles, published between 1992 and 2014. (2014) * Search for articles by title, authors, and methods. * Interactive visualizations of methodological parameters over time, by author, and more. * All data are programmatically accessible through a simple application programming interface. It''s simple to re-analyze the data or integrate with your own application.
Proper citation: NeuroTrends (RRID:SCR_003921) Copy
https://sites.google.com/site/p2tconsortium/
A three-member pharmaceutical industry consortium that aims to provide a new platform to improve access to information about clinical trials for patients and providers. The platform aims to enhance the existing clinicaltrials.gov by providing more detailed and patient-friendly information about available trials and embedding a machine-readable target health profile to improve the ability of healthcare software to match individual health profiles with applicable clinical trials. Using clinicaltrials.gov as its foundation and Eli Lilly''''s Application Programming Interface (API), the consortium is focused on creating an open platform to make this data more amenable to patients and providers, as well as creating an opportunity to integrate a patient''''s electronic health record into the clinical trial matching service. This feature will allow patients to search for trials using their own Blue Button data. The following features are planned add-ons to clinicaltrials.gov: * Target Profile is a machine readable query, that can be executed against an electronic file (or record) with patient health data such as an Electronic Health Record (EHR), an Electronic Medical Record (EMR) or Personally Controlled Health Record (PCHR) * Augmented Content is public, IRB approved information about the study that has not been published on clinicaltrials.gov, and that is shared with / targeted for patients with a matching Target Profile. The following are the incremental goals of the consortium: * Advancement of the Lilly API platform to support read/write interaction and additional data objects and information. * The initial 3 sponsor organizations - Lilly, Pfizer and Novartis - will upload Target Profiles for a select set of clinical trials. A Target Profile is a machine interpretable description of the characteristics of patients who may qualify for that trial i.e. a query that can be executed against a patient''''s electronic health record or personal health record. Additionally, sponsors of clinical research studies will also be able to upload Augmented Content to the Lilly Platform to supplement information on clinicaltrials.gov with additional, patient-focused information about the study, e.g., a study brochure and practical information on how to contact investigational sites. * A matching service, developed by Corengi, will compare Target Profiles to a de-dentified personally controlled health record (PCHR), represented by patient''''s Blue Button Plus CCDA XML document. * Integration into a patient community platform from Avado for providing the patient PCHR and presenting the results of the match service. The patient will be able to explore the respective matching studies for additional information and next steps such as contacting a nearby investigator clinic or hospital. The first demo of the prototype was made available on June 2014, built on a database of anonymized patient health records from different clinical research studies sponsored by Lilly, Novartis, and Pfizer. Other website: http://portal.lillycoi.com/
Proper citation: Patients to Trials Consortium (RRID:SCR_003877) Copy
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