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SciCrunch Registry is a curated repository of scientific resources, with a focus on biomedical resources, including tools, databases, and core facilities - visit SciCrunch to register your resource.

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Resource Name Proper Citation Abbreviations Resource Type Description Keywords Resource Relationships Related Condition Funding Defining Citation Availability Specification URL Alternate IDs Alternate URLs Old URLs Parent Organization Resource ID Synonyms Record Last Update Mentions Count
Charles River Laboratories
 
Resource Report
Resource Website
10000+ mentions
Charles River Laboratories (RRID:SCR_003792) CRL biomaterial supply resource, material resource, organism supplier Commercial organism provider selling mice, rats and other model animals. American corporation specializing in a variety of pre-clinical and clinical laboratory services for the pharmaceutical, medical device and biotechnology industries. It also supplies assorted biomedical products and research and development outsourcing services for use in the pharmaceutical industry. (Wikipedia) RIN, Resource Information Network, pre-clinical, clinical, pharmaceutical, medical device, biotechnology, drug, drug discovery, RRID Community Authority is listed by: Resource Information Network
is related to: Oncotest
works with: International Mouse Strain Resource
SCR_013551, grid.452317.6, nlx_158088, nif-0000-00462, Wikidata: Q28974283 https://ror.org/01tasya06 SCR_003792 Charles River Laboratories Inc., Charles River, Charles River Laboratories International Inc. 2026-08-03 09:32:19 11489
Polycystic Kidney Disease Outcomes Consortium
 
Resource Report
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Polycystic Kidney Disease Outcomes Consortium (RRID:SCR_003674) PKDOC consortium, organization portal, data or information resource, portal Consortium to develop evidence supporting the use of imaging Total Kidney Volume (TKV) as a prognostic biomarker that predicts the progression of Autosomal Dominant Polycystic Kidney Disease (ADPKD) to select patients likely to respond to therapy into clinical trials. It aims to replace the currently used measurement of glomerular filtration rate (GFR). Scientists will use the data collected to develop a disease progression model that will evaluate the relationship between TKV and the known complications of ADPKD, including rate of loss of kidney function, hypertension, gross hematuria, kidney stones, urinary tract infections, development of end-stage renal disease, and mortality. These analyses will be used to support the regulatory qualification of TKV as an accepted measure for assessing the progression of ADPKD in clinical trials in which new therapies are tested. PKDOC has the following goals: # Develop standard clinical data elements and definitions that are specific to ADPKD # Create a database of aggregated data from existing multiple, longitudinal, and well-characterized research registries maintained over decades by the leading institutions in ADPKD clinical investigation # Advance and harmonize the missions of regulatory agencies by creating tools that help with the evaluation of new pharmaceutical compounds # Develop a quantitative disease progression model to examine the linkage between TKV and disease outcomes consortium, drug, imaging, total kidney volume, biomarker, rate, disease progression, imaging biomarker, drug development, kidney volume, kidney, clinical, common data element, therapeutic, clinical trial, standard specification, database is listed by: Consortia-pedia
has parent organization: Critical Path Institute; Arizona; USA
PKD Foundation ;
Philanthropic donations ;
U.S. Food and Drug Administration
nlx_157909 SCR_003674 PKD Outcomes Consortium, PKD Consortium, Polycystic Kidney Disease (PKD) Outcomes Consortium 2026-08-03 09:32:13 0
AirPROM
 
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AirPROM (RRID:SCR_003827) AirPROM consortium, organization portal, data or information resource, portal Consortium focused on developing computer and physical models of the airway system for patients with asthma and chronic obstructive pulmonary disease (COPD). Developing accurate models will better predict how asthma and COPD develop, since current methods can only assess the severity of disease. They aim to bridge the gaps in clinical management of airways-based disease by providing reliable models that predict disease progression and the response to treatment for each person with asthma or COPD. A data management platform provides a secure and sustainable infrastructure that semantically integrates the clinical, physiological, genetic, and experimental data produced with existing biomedical knowledge from allied consortia and public databases. This resource will be available for analysis and modeling, and will facilitate sharing, collaboration and publication within AirPROM and with the broader community. Currently the AirPROM knowledge portal is only accessible by AirPROM partners. model, airway system, lung, consortium, clinical, imaging, respiratory system, tissue sample, airway model, genomic, gas diffusion mri, airway development, function, physiological, genetic, computational model, gene-environment interaction is listed by: Consortia-pedia
has parent organization: European Lung Foundation
European Union FP7 nlx_158142 SCR_003827 Airway Disease Predicting Outcomes through Patient Specific Computational Modelling 2026-08-03 09:32:19 0
BioSHaRE
 
Resource Report
Resource Website
10+ mentions
BioSHaRE (RRID:SCR_003811) BIOSHARE-EU organization portal, portal, standard specification, narrative resource, consortium, data or information resource A consortium of leading biobanks and international researchers from all domains of biobanking science to ensure the development of harmonized measures and standardized computing infrastructures enabling the effective pooling of data and key measures of life-style, social circumstances and environment, as well as critical sub-components of the phenotypes associated with common complex diseases. The overall aim is to build upon tools and methods available to achieve solutions for researchers to use pooled data from different cohort and biobank studies. This, in order to obtain the very large sample sizes needed to investigate current questions in multifactorial diseases, notably on gene-environment interactions. This aim will be achieved through the development of harmonization and standardization tools, implementation of these tools and demonstration of their applicability. BioSHaRE researchers are collaborating with P3G, the Global Alliance for Genomics and Health, IRDiRC (International Rare Diseases Research Consortium), H3Africa and other organizations on the development of an International Code of Conduct for Genomic and Health-Related Data Sharing. A draft version is available for external review. Generic documents have been prepared covering areas of biobanking that are of major importance. SOPs have been finalized for blood withdrawal (SOPWP5001blood withdrawal), manual blood processing (SOPWP5002blood processing), shipping of biosamples (SOPWP5003shipping) and withdrawal, processing and storage of urine samples (SOPWP5004urine). gene-environment interaction, life-style, social circumstance, environment, phenotype, disease, biobank, socio-economic factor, data sharing, gene, clinical is listed by: Consortia-pedia
has parent organization: University of Groningen; Groningen; Netherlands
is parent organization of: BioResource Impact Factor
European Union FP7 nlx_158110 SCR_003811 Biobank Standardisation and Harmonisation for Research Excellence, Biobank Standardisation and Harmonisation for Research Excellence in the European Union 2026-08-03 09:32:34 21
Canadian Consortium on Neurodegeneration in Aging
 
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Canadian Consortium on Neurodegeneration in Aging (RRID:SCR_003846) CCNA consortium, organization portal, data or information resource, portal Consortium that will be the premier research hub for all aspects of research involving neurodegenerative diseases that affect cognition in aging - including Alzheimer's disease. They will promote high impact, inter-institutional and interdisciplinary collaboration through a pan-Canadian approach, and will position Canadian researchers to lead and participate in a new wave of national and international initiatives with congruent goals. The consortium focuses research into the basic mechanisms of neurodegenerative diseases, accelerating the development of tools that can be used to assist in the diagnosis and treatment of the diseases. The intended outcome of these tools is to improve the quality of life and services patients with neurodegenerative diseases. As part of the Canadian contribution to the International Collaborative Research Strategy for Alzheimer's disease, the consortium brings together Canadian government agencies (federal and provincial), foundations, pharmaceutical companies, philanthropists and international stakeholders to identify if there are common causes and risk factors to neurodegenerative diseases. The consortium is focused on three themes: * Primary Prevention aimed at preventing the disease from developing * Secondary Prevention focused on delaying the clinical manifestations of the already developing disease * Quality of Life designed for helping individuals, caregivers and the health system in the context of a clinically developed disease. cognition, biomarker, primary prevention, secondary prevention, quality of life, clinical, late adult human, prevention is listed by: Consortia-pedia
has parent organization: Institute of Aging - CIHR
Canadian Institutes of Health Research ;
Alzheimer Society of Canada ;
Alzheimers Research UK
nlx_158160 SCR_003846 Canadian Consortium on Neurodegeneration in Aging (CCNA) 2026-08-03 09:32:35 0
MMRF CoMMpass Study
 
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MMRF CoMMpass Study (RRID:SCR_003721) CoMMpass organization portal, portal, disease-related portal, topical portal, consortium, data or information resource A personalized medicine initiative to discover biomarkers that can better define the biological basis of multiple myeloma to help stratify patients. This effort hopes to obtain samples from approximately 1,000 multiple myeloma patients and follow them over time to identify how a patient's genetic profile is related to clinical progression and treatment response. As a partnership between 17 academic centers, 5 pharmaceuticals and the Department of Veterans Affairs, the goal of this eight year study is to create a database that can accelerate future clinical trials and personalized treatment strategies. MMRF's CoMMpass Study has the following goals: * Create a guide to which treatments work best for specific patient subgroups. * Share data with researchers to accelerate drug development for specific subtypes of multiple myeloma patients. In order to facilitate discoveries and development related to targeted therapies, the comprehensive data from CoMMpass is placed in an open-access research portal. The data will be part of the Multiple Myeloma Research Foundation's (MMRF) Personalized Medicine Platform combines CoMMpass data with those collected from MMRF's Genomics Initiative. It is hoped that the longitudinal data, combined with the annotated bio-specimens will help provide insights that can accelerate personalized therapies. consortium, biomarker, molecular, genetic, blood, cancer, clinical, data sharing uses: Multiple Myeloma Genomics Portal
is listed by: Consortia-pedia
has parent organization: Multiple Myeloma Research Foundation
United States Department of Veterans Affairs ;
Multiple Myeloma Research Foundation
nlx_157899 SCR_003721 Relating Clinical Outcomes in MM to Personal Assessment of Genetic Profile, Relating Clinical Outcomes in Multiple Myeloma to Personal Assessment of Genetic Profile Study, Multiple Myeloma Research Foundation (MMRF) - CoMMpass Study 2026-08-03 09:32:31 0
BiomarCaRE
 
Resource Report
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10+ mentions
BiomarCaRE (RRID:SCR_003841) BIOMARCARE, BiomarCaRE consortium, organization portal, data or information resource, portal EU funded consortium including over 30 partner from academia and industry. BiomarCaRE aims to determine the value of established and emerging biomarkers to improve risk estimation of cardiovascular disease in Europe. BiomarCaRE relies on an exceptional resource of large scale epidemiological cohorts with long term follow-up and available bio specimens based on the population of the MORGAM Project as well as several cardiovascular disease cohorts and clinical trials. drug, biomarker, diagnostic, cardiovascular risk, phenotype, ultrasound, mri, clinical, epidemiological, risk prediction, lifestyle, risk factor, heart is listed by: Consortia-pedia European Union FP7 nlx_158154, SCR_013677 SCR_003841 BiomarCaRE.EU, Biomarker for Cardiovascular Risk Assessment in Europe (BIOMARCARE), Biomarker for Cardiovascular Risk Assessment in Europe 2026-08-03 09:32:19 27
Nephrology Nursing Certification Commission
 
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Nephrology Nursing Certification Commission (RRID:SCR_003994) NNCC organization portal, data or information resource, portal, training resource 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 nephrology, kidney, nursing, certification, clinical, dialysis, hemodialysis is related to: American Nephrology Nurses Association
is related to: Kidney Health Initiative
Kidney disease nlx_158407 SCR_003994 Nephrology Nursing Certification Board, NNCB 2026-08-03 09:32:20 0
ERA-EDTA
 
Resource Report
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10+ mentions
ERA-EDTA (RRID:SCR_003982) ERA-EDTA community building portal, data or information resource, portal An association of European kidney specialists whose objective is advancement of medical science and of clinical work in nephrology, dialysis, renal transplantation, hypertension and related subjects. They aim at providing up-to-date knowledge, exclusively based on scientific data, independent from governments'' policies and from any influence of the industry. It is registered in England and Wales, but its area of activity mainly covers Europe and the Mediterranean area. kidney, dialysis, transplant, nephrology, medical, clinical, renal transplantation, hypertension is related to: Kidney Health Initiative Kidney disease nlx_158389 SCR_003982 European Renal Association - European Dialysis and Transplant Association, European Renal Association - European Dialysis & Transplant Association 2026-08-03 09:32:20 22
EGAPP
 
Resource Report
Resource Website
1+ mentions
EGAPP (RRID:SCR_004189) EGAPP topical portal, data or information resource, portal Initiative to develop a systematic, evidence-based process for evaluating genetic tests and other applications of genomic technology that are rapidly moving from research to use in clinical practice. A key objective of this process is to provide objective, timely, and credible information that is clearly linked to the scientific evidence on specific applications of genetic and genomic tests. The primary focus of EGAPP activities is an independent, nonfederal expert panel, the EGAPP Working Group. Other components of the EGAPP initiative include a federal interagency, the CDC staff and consultants, and an EGAPP initiative evaluation team. genetic test, genomics, clinical, genomic technology, evaluation, public health is listed by: OMICtools
has parent organization: Centers for Disease Control and Prevention
OMICS_01538 SCR_004189 Evaluation of Genomic Applications in Practice and Prevention (EGAPP), Evaluation of Genomic Applications in Practice and Prevention 2026-08-03 09:32:37 1
Wellcome Images
 
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Resource Website
Wellcome Images (RRID:SCR_004181) Wellcome Images image collection, data repository, data or information resource, database, image repository, storage service resource, service resource THIS RESOURCE IS NO LONGER IN SERVICE. Documented on January 9, 2023.Digital collection of images, with themes ranging from medical and social history to contemporary healthcare and biomedical science. The collection contains historical images from the Wellcome Library collections, Tibetan Buddhist paintings, ancient Sanskrit manuscripts written on palm leaves, beautifully illuminated Persian books and much more. The Biomedical Collection holds over 40 000 high-quality images from the clinical and biomedical sciences. Selected from the UK''s leading teaching hospitals and research institutions, it covers disease, surgery, general healthcare, sciences from genetics to neuroscience including the full range of imaging techniques. They are always looking for new high quality biomedical images from scientific researchers, clinical photographers and artists in any field of science or medicine. As a contributor you retain your original material and copyright, and receive commission and full credit each time your images are used. The annual Wellcome Images awards (previously known as Biomedical Images Awards) reward contributors for their outstanding work and winners are chosen by a panel of experts. The resulting public exhibitions are always extremely popular and receive widespread acclaim. All images on the Wellcome Images site are available free for use in: * private study and non-commercial research * examination papers * criticism and review, this applies only where there are no multiple copies made * theses submitted by a student at a higher or further education institution for the purposes of securing a degree * personal use by private individuals biomedical, clinical, disease, surgery, healthcare, genetics, neuroscience, imaging, science, medicine, history, painting, manuscript Wellcome Trust THIS RESOURCE IS NO LONGER IN SERVICE r3d100010779, nlx_143611 https://doi.org/10.17616/R3HS58 SCR_004181 2026-08-03 09:32:37 0
TRANSFoRm Clinical Research Information Model
 
Resource Report
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TRANSFoRm Clinical Research Information Model (RRID:SCR_003889) CRIM narrative resource, data or information resource, standard specification, report 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. clinical, randomized clinical trial, clinical trial, primary care, genetic, clinical research, electronic health record, model, interoperability uses: Clinical Data Interchange Standards Consortium
is used by: TRANSFoRm Data Integration Models
has parent organization: TRANSFoRm
nlx_158219 SCR_003889 Clinical Research Information Model 2026-08-03 09:32:20 0
Vascular Access Society of the Americas
 
Resource Report
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Vascular Access Society of the Americas (RRID:SCR_004058) VASA community building portal, data or information resource, portal Society devoted to the advancement of the field of dialysis access through research, education and advocacy for patients with end stage kidney disease. They provide vascular access education for physicians, nurses, and other health care professionals and advocate for evidenced-based best clinical practices. dialysis, kidney, clinical, vascular is related to: Kidney Health Initiative End stage kidney disease nlx_158492 SCR_004058 2026-08-03 09:32:36 0
Big Ten Cancer Research Consortium
 
Resource Report
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Big Ten Cancer Research Consortium (RRID:SCR_004025) BTCRC consortium, organization portal, data or information resource, portal A consortium that aims to transform cancer research through collaborative oncology trials that leverage the scientific and clinical expertise of the Big Ten universities. The goal is to align the conduct of cancer research through collaborative, hypothesis-driven, highly translational oncology trials that leverage the scientific and clinical expertise. The clinical trials that will be developed will be linked to molecular diagnostics, enabling researchers to understand what drives the cancers to grow and what might be done to stop them from growing. The consortium also leverages geographical locations and existing relationships among the cancer centers. One of the consortium's goals is to harmonize contracts and scientific review processes to expedite clinical trials. The consortium will only focus on phase 0 to II trials because larger trials - even a randomized phase II trial - are difficult to conduct at a single cancer center. oncology, drug development, basic research, clinical trial, clinical, genitourinary, gastrointestinal, thoracic, breast, nanotechnology, virus, triple-negative cell is affiliated with: Penn State Milton S. Hershey Medical Center; Pennsylvania; USA
is affiliated with: University of Wisconsin-Madison; Wisconsin; USA
is affiliated with: Rutgers University; New Jersey; USA
is affiliated with: Northwestern University; Illinois; USA
is affiliated with: University of Nebraska; Nebraska; USA
is affiliated with: University of Minnesota Twin Cities; Minnesota; USA
is affiliated with: Michigan State University; Michigan; USA
is affiliated with: University of Michigan; Ann Arbor; USA
is affiliated with: University of Iowa; Iowa; USA
is affiliated with: Indiana University; Indiana; USA
is affiliated with: University of Illinois College of Medicine; Illinois; USA
has parent organization: Hoosier Cancer Research Network
Cancer Public nlx_158452 SCR_004025 Big Ten CRC 2026-08-03 09:32:21 0
EU-ADR
 
Resource Report
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1+ mentions
EU-ADR (RRID:SCR_004028) EU-ADR consortium, organization portal, data or information resource, portal Consortium that created the capability to detect Adverse Drug Response (ADR) signals by creating the infrastructure for large-scale monitoring of drug safety using electronic health records (EHR). The platform leverages EHR''''s comprising demographics, drug use and clinical data of over 30 million patients from several European countries. Special attention was given to patient groups that are not routinely involved in clinical trials, for ethical or practical reasons (e.g. pregnant women, elderly people, people using many drugs simultaneously, and children). This project also studies and compares a number of different techniques that all aim to detect unexpected or disproportional rates of events. The algorithms that they studied originate not only from the field of (pharmaco)epidemiology, but also from fields such as bio-terrorism, machine learning, and classical signal detection. EU-ADR specific objectives are: To detect events, To relate these events to drugs, To develop hypothesis that explain adverse events, To detect adverse events earlier, and To avoid false positives. The web-based platform is available at https://bioinformatics.ua.pt/euadr/ EU-ADR has contributed to the ability to conduct better drug safety studies based on the re-use of healthcare data. By facilitating the early detection of adverse drug reactions, but also providing key information on populations at risk, potential drug interactions, potential underlying mechanisms and intervening pathways in adverse events, etc., the project will allow for improved and more complete information to be available for drug and healthcare delivery, leading to increased patient safety and its associated cost savings. The EU-ADR system can be considered as a complementary tool to already existing pharamcovigilance systems. Should the system be widespread in the long term, it has the potential to contribute to the development of future electronic health record systems, insofar as the expected benefits of these IT tools are only fully attainable when EHRs develop themselves in consistency, richness and formats that allow them to be subject of such tools. In anticipation, EU-ADR has been designed to be modular and scalable, so that different EHR databases (other than those participating in the Consortium) can be progressively enlisted in the future, adopt the software for data extraction and therefore become susceptible of exploitation by the system, for maximum global effect. adverse drug reaction, clinical, biomedical, drug safety, electronic health record, demographic, drug use, clinical data, late adult human, child, young human, pregnant, drug, adverse event, signal detection, drug development, data sharing, text mining, epidemiology, database, data set, data repository, text extraction software is listed by: Consortia-pedia
is related to: Mar Institute of Medical Research Foundation
is related to: University of Aveiro; Aveiro; Portugal
has parent organization: Mar Institute of Medical Research Foundation
has parent organization: University of Aveiro; Aveiro; Portugal
European Union FP7 nlx_158456 SCR_004028 Exploring and Understanding Adverse Drug Reactions by Integrative Mining of Clinical Records and Biomedical Knowledge 2026-08-03 09:32:20 9
Biomarkers of Anti-TNF Treatment Efficacy in Rheumatoid Arthritis - Unresponsive Populations
 
Resource Report
Resource Website
Biomarkers of Anti-TNF Treatment Efficacy in Rheumatoid Arthritis - Unresponsive Populations (RRID:SCR_004019) BATTER-UP topical portal, data or information resource, portal A consortium evaluating a new biomarker screening test that might help identify patients with rheumatoid arthritis (RA) who are unlikely to benefit from anti-tumor necrosis factor-alpha (TNFalpha) medications. BATTER-UP will enroll around 1,000 patients being treated by one of several marketed anti-TNF RA drugs: Enbrel, Remicade, Humira, Simponi, or Cimzia. Through data analyses and predictive response modeling, the consortium aims to better understand which patients with RA will derive the greatest benefit from TNF inhibitors. The investigators in this observational study will attempt to validate an 8-gene biomarker set based on work by Biogen Idec researchers as likely to predict anti-TNF responsiveness in patients with RA. In preliminary results, the 8-gene biomarker set predicted with 89% accuracy individuals who did not reach European League Against Rheumatism (EULAR) Disease Activity Score (DAS)-28 good response after 14 weeks of treatment. The 8 genes included in the screen are CLTB, MXRA7, CXorf52, COL4A3BP, YIPF6, FAM44A, SFRS2, and PGK1. Biological samples and clinical outcome information will be used to confirm and extend the utility of previously published biomarkers that can predict response to anti-TNF agents. These data may also generate new hypotheses for further testing. The BATTER-UP samples and data will be established as a reference set for investigation of personalized medicine in RA. The study will be a resource of DNA and other biological materials that can be investigated for biomarkers in the future as new technologies arise. anti-tumor necrosis factor-alpha, gene, biomarker, drug development, basic research, personalized medicine, enbrel, remicade, humira, simponi, cimzia, cltb, mxra7, cxorf52, col4a3bp, yipf6, fam44a, sfrs2, pgk1, clinical, dna, serum, plasma, rna, whole blood uses: ClinicalTrials.gov
is listed by: Consortia-pedia
is related to: Feinstein Institute for Medical Research
has parent organization: Feinstein Institute for Medical Research
has parent organization: ClinicalTrials.gov
Biogen Idec ;
Bristol-Myers Squibb ;
Centocor ;
Crescendo Bioscience ;
Genentech ;
Medco Health Solutions ;
Regeneron Pharmaceuticals ;
Sanofi-Aventis
nlx_158440 SCR_004019 Biomarkers of Anti-TNF-alpha Therapy Efficacy in Rheumatoid Arthritis to Define Unresponsive Patients, Biomarkers of Anti-TNF- Therapy Efficacy in Rheumatoid Arthritis to Define Unresponsive Patients (BATTER-UP), Biomarkers of Anti-TNF- Therapy Efficacy in Rheumatoid Arthritis to Define Unresponsive Patients 2026-08-03 09:32:20 0
BioMedBridges
 
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1+ mentions
BioMedBridges (RRID:SCR_006179) BioMedBridges consortium, organization portal, data or information resource, 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 2026-08-03 09:33:02 6
Deciphering Developmental Disorders
 
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10+ mentions
Deciphering Developmental Disorders (RRID:SCR_006171) DDD portal, disease-related portal, service resource, topical portal, biospecimen repository, material storage repository, storage service resource, research forum portal, data or information resource The Deciphering Developmental Disorders (DDD) study aims to find out if using new genetic technologies can help doctors understand why patients get developmental disorders. To do this we have brought together doctors in the 23 NHS Regional Genetics Services throughout the UK and scientists at the Wellcome Trust Sanger Institute, a charitably funded research institute which played a world-leading role in sequencing (reading) the human genome. The DDD study involves experts in clinical, molecular and statistical genetics, as well as ethics and social science. It has a Scientific Advisory Board consisting of scientists, doctors, a lawyer and patient representative, and has received National ethical approval in the UK. Over the next few years, we are aiming to collect DNA and clinical information from 12,000 undiagnosed children in the UK with developmental disorders and their parents. The results of the DDD study will provide a unique, online catalogue of genetic changes linked to clinical features that will enable clinicians to diagnose developmental disorders. Furthermore, the study will enable the design of more efficient and cheaper diagnostic assays for relevant genetic testing to be offered to all such patients in the UK and so transform clinical practice for children with developmental disorders. Over time, the work will also improve understanding of how genetic changes cause developmental disorders and why the severity of the disease varies in individuals. The Sanger Institute will contribute to the DDD study by performing genetic analysis of DNA samples from patients with developmental disorders, and their parents, recruited into the study through the Regional Genetics Services. Using microarray technology and the latest DNA sequencing methods, research teams will probe genetic information to identify mutations (DNA errors or rearrangements) and establish if these mutations play a role in the developmental disorders observed in patients. The DDD initiative grew out of the groundbreaking DECIPHER database, a global partnership of clinical genetics centres set up in 2004, which allows researchers and clinicians to share clinical and genomic data from patients worldwide. The DDD study aims to transform the power of DECIPHER as a diagnostic tool for use by clinicians. As well as improving patient care, the DDD team will empower researchers in the field by making the data generated securely available to other research teams around the world. By assembling a solid resource of high-quality, high-resolution and consistent genomic data, the leaders of the DDD study hope to extend the reach of DECIPHER across a broader spectrum of disorders than is currently possible. microarray, sequencing, child, genome, chromosome, dna sequencing, ethics, interview, dna, saliva, clinical, genetics, gene, diagnosis, phenotype, clinical data, FASEB list is related to: DECIPHER
has parent organization: Wellcome Trust Sanger Institute; Hinxton; United Kingdom
Developmental disorder, Genetic disorder, Parent, Neurodevelopmental disorder, Congenital anomaly, Abnormal growth, Dysmorphic feature, Unusual behavioral phenotype Wellcome Trust ;
Health Innovation Challenge Fund
PMID:21679367 nlx_151673 SCR_006171 Deciphering Developmental Disorders (DDD) 2026-08-03 09:33:00 42
Human Imaging Database
 
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1+ mentions
Human Imaging Database (RRID:SCR_006126) HID data repository, data management software, software application, service resource, database, image repository, source code, storage service resource, data or information resource, software resource THIS RESOURCE IS NO LONGER IN SERVICE. Documented October 5, 2017.

Database management system developed to handle the increasingly large and diverse datasets collected as part of the MBIRN and FBIRN collaboratories and throughout clinical imaging communities at large. The HID can be extended to contain relevant information concerning experimental subjects, assessments of subjects, the experimental data collected, the experimental protocols, and other metadata normally included with experiments.
imaging, fmri, clinical, behavior, biomedical imaging data, mri is listed by: NeuroImaging Tools and Resources Collaboratory (NITRC)
is related to: Cognitive Paradigm Ontology
is related to: XCEDE Schema
has parent organization: Biomedical Informatics Research Network
Schizophrenia PMID:19826494
PMID:18348946
THIS RESOURCE IS NO LONGER IN SERVICE nif-0000-00269 http://www.nitrc.org/projects/hid http://fbirnbdr.nbirn.net:8080/BDR/ SCR_006126 fBIRN Data Repository, Human Imaging Database (HID) System, Function BIRN Data Repository 2026-08-03 09:32:54 3
ChiCTR - Chinese Clinical Trial Registry
 
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ChiCTR - Chinese Clinical Trial Registry (RRID:SCR_006037) ChiCTR data repository, data or information resource, database, registry, storage service resource, clinical trial, service resource National clinical trial registry by Ministry of Health of China to join World Health Organization International Clinical Trial Registration Platform (WHO ICTRP Primary Registry), and the approved Primary Registry of WHO ICTRP. It registers both Chinese and global clinical trials, receives data from Partner Registers certified by the WHO ICTRP, and submits data to the WHO ICTRP Central Repository for global search. Moreover, based upon the talent and technical platform, consisting of Chinese Evidence-based Medicine Centre of Ministry of Health of China, Virtual Research Centre of Evidence-Based Medicine of Ministry of Education of China, Chinese Cochrane Centre, UK Cochrane Centre and International Clinical Epidemiology Network Resource and Training Centre in West China Hospital, Sichuan University (INCLEN CERTC), ChiCTR is responsible for providing consultations on trial design, central randomization service, guidance on the writing of clinical trial reports and relevant training. WHO takes the lead in establishing the global clinical trial registration system, which is agreed upon by governments from all over the world. There are both ethical and scientific reasons for clinical trial registration. Trial participants expect that their contributions to biomedical knowledge will be used to improve health care for everyone. Open access to information about ongoing and completed trials meets the ethical duty to trial participants, and promotes greater trust and public confidence in clinical research. Furthermore, trial registration ensures that the results of all trials can be tracked down and should help to reduce unnecessary duplication of research through greater awareness of existing trials and results. The mission of ChiCTR is to Unite clinicians, clinical epidemiologists, biostatisticians, epidemiologists and health care managers both at home and abroad, to manage clinical trials in a strict and scientific manner, and to promote their quality in China, so as to provide reliable evidences from clinical trials for health care workers, consumers and medical policy decision makers, and also to use medical resources more effectively to provide better service for Chinese people and all human beings. Any trial performed in human beings is considered as a clinical trial, and should be registered before its implementation. All the registered clinical trials will be granted a unique registration number by WHO ICTRP. clinical trial, registry, registration, clinical, trial, china is related to: WHO International Clinical Trials Registry Platform
has parent organization: Sichuan University; Sichuan; China
nlx_151504 SCR_006037 Chinese Clinical Trial Registry 2026-08-03 09:33:00 35

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