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http://www.LOVD.nl/

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.

Proper citation: Leiden Open Variation Database (RRID:SCR_006566) Copy   

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https://fitbir.nih.gov/

Platform for Traumatic Brain Injury relevant data. System was developed to share data across entire TBI research field and to facilitate collaboration between laboratories and interconnectivity between informatics platforms. FITBIR implements interagency Common Data Elements for TBI research and provides tools and resources to extend data dictionary. Established submission strategy to ensure high quality and to provide maximum benefit to investigators. Qualified researchers can request access to data stored in FITBIR and/or data stored at federated repositories.

Proper citation: Federal Interagency Traumatic Brain Injury Research Informatics System (RRID:SCR_006856) Copy   

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http://www.niaid.nih.gov/topics/transplant/research/Pages/fundedBasics.aspx#NHPTCSP

Cooperative program for research on nonhuman primate models of kidney, islet, heart, and lung transplantation evaluating the safety and efficacy of existing and new treatment regimens that promote the immune system''''s acceptance of a transplant and to understand why the immune system either rejects or does not reject a transplant. This program bridges the critical gap between small-animal research and human clinical trials. The program supports research into the immunological mechanisms of tolerance induction and development of surrogate markers for the induction, maintenance, and loss of tolerance.

Proper citation: Nonhuman Primate Transplantation Tolerance Cooperative Study Group (RRID:SCR_006847) Copy   

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http://diabetes.niddk.nih.gov/dm/pubs/america/

A compilation and assessment of epidemiologic, public health, and clinical data on diabetes and its complications in the United States. Published by the National Diabetes Data Group of the National Institute of Diabetes and Digestive and Kidney Diseases, the book contains 36 chapters organized in five areas: * the descriptive epidemiology of diabetes in the United States based on national surveys and community-based studies, including prevalence, incidence, sociodemographic and metabolic characteristics, risk factors for developing diabetes, and mortality * the myriad complications that affect patients with diabetes * characteristics of therapy and medical care for diabetes * economic aspects, including health insurance and health care costs * diabetes in special populations, including African Americans, Hispanics, Asian and Pacific Islanders, Native Americans, and pregnant women. Diabetes in America, 2nd Edition, has been designed to serve as a reliable scientific resource for assessing the scope and impact of diabetes and its complications, determining health policy and priorities in diabetes, and identifying areas of need in research. The intended audience includes health policy makers at the local and Federal levels who need a sound quantitative base of knowledge to use in decision making; clinicians who need to know the probability that their patients will develop diabetes and the prognosis of the disease for complications and premature mortality; persons with diabetes and their families who need sound information on which to make decisions about their life with diabetes; and the research community which needs to identify areas where important scientific knowledge is lacking.

Proper citation: Diabetes in America (RRID:SCR_006754) Copy   

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http://cebs.niehs.nih.gov

Repository for toxicogenomics data, including study design and timeline, clinical chemistry and histopathology findings and microarray and proteomics data. Data derived from studies of chemicals and of genetic alterations, and is compatible with clinical and environmental studies. Data relating to environmental health, pharmacology, and toxicology. It is not necessary to have microarray data, but study design and phenotypic anchoring data are required.CEBS contains raw microarray data collected in accordance with MIAME guidelines and provides tools for data selection, pre-processing and analysis resulting in annotated lists of genes of interest. Biomedical Investigation Database is another component of CEBS system. used to load and curate study data prior to export to CEBS, in addition to capturing and displaying novel data types such as PCR data, or additional fields of interest, including those defined by the HESI Toxicogenomics Committee. BID has been shared with Health Canada and the US Environmental Protection Agency.

Proper citation: Chemical Effects in Biological Systems (CEBS) (RRID:SCR_006778) Copy   

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http://www.chr7.org

Database containing the DNA sequence and annotation of the entire human chromosome 7, encompassing nearly 158 million nucleotides of DNA and 1917 gene structures, are presented; the most up to date collation of sequence, gene, and other annotations from all databases (eg. Celera published, NCBI, Ensembl, RIKEN, UCSC) as well as unpublished data. To generate a higher order description, additional structural features such as imprinted genes, fragile sites, and segmental duplications were integrated at the level of the DNA sequence with medical genetic data, including 440 chromosome rearrangement breakpoints associated with disease. The objective of this project is to generate a comprehensive description of human chromosome 7 to facilitate biological discovery, disease gene research and medical genetic applications. There are over 360 disease-associated genes or loci on chromosome 7. A major challenge ahead will be to represent chromosome alterations, variants, and polymorphisms and their related phenotypes (or lack thereof), in an accessible way. In addition to being a primary data source, this site serves as a weighing station for testing community ideas and information to produce highly curated data to be submitted to other databases such as NCBI, Ensembl, and UCSC. Therefore, any useful data submitted will be curated and shown in this database. All Chromosome 7 genomic clones (cosmids, BACs, YACs) listed in GBrowser and in other data tables are freely distributed.

Proper citation: Chromosome 7 Annotation Project (RRID:SCR_007134) Copy   

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http://www.crdamc.amedd.army.mil/behav-health/strong-star.aspx

A multidisciplinary and multi-institutional research consortium to develop and evaluate the most effective early interventions possible for the detection, prevention, and treatment of combatrelated posttraumatic stress disorder (PTSD) in activeduty military personnel and recently discharged veterans. Complementary investigations are focused on the root causes of PTSD, including biological factors that influence PTSD susceptibility and recovery; the influence of comorbid physical and psychological ailments; and the interaction of cognitive-behavioral therapies and pharmacologic treatments. The full cohort of STRONG STAR trials include: Treatment Studies, Biological Studies, Epidemiological Studies, and Preclinical Studies. STRONG STAR is currently conducting three clinical treatment trials at Carl R. Darnall Army Medical Center (CRDAMC). The studies are examining the effectiveness of Cognitive Processing Therapy (CPT), Prolonged Exposure Therapy (PE) and Cognitive Behavioral Therapy for Insomnia (CBTi) with active duty service members. Treatments are offered in individual, group, and online formats, and last from two to eight weeks. Study participants must be active duty service members who will remain in the Ft Hood area for at least 34 months to complete initial assessments and treatment programs. Referrals to the treatment studies can be made through a behavioral health provider or through selfreferral., THIS RESOURCE IS NO LONGER IN SERVICE. Documented on September 16,2025.

Proper citation: Strong Star (RRID:SCR_003132) Copy   

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http://edoctoring.ncl.ac.uk/Public_site/

Online educational tool that brings challenging clinical practice to your computer, providing medical education that is engaging, challenging and interactive. While there is no substitute for real-life direct contact with patients or colleagues, research has shown that interactive online education can be a highly effective and enjoyable method of learning many components of clinical medicine, including ethics, clinical management, epidemiology and communication skills. eDoctoring offers 25 simulated clinical cases, 15 interactive tutorials and a virtual library containing numerous articles, fast facts and video clips. Their learning material is arranged in the following content areas: * Ethical, Legal and Social Implications of Genetic Testing * Palliative and End-of-Life Care * Prostate Cancer Screening and Shared Decision-Making

Proper citation: eDoctoring (RRID:SCR_003336) Copy   

•   Source: SciCrunch Registry

http://purl.bioontology.org/ontology/CMO

An ontology designed to be used to standardize morphological and physiological measurement records generated from clinical and model organism research and health programs.

Proper citation: Clinical Measurement Ontology (RRID:SCR_003291) Copy   

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http://purl.bioontology.org/ontology/MMO

An ontology designed to represent the variety of methods used to make qualitative and quantitative clinical and phenotype measurements both in the clinic and with model organisms.

Proper citation: Measurement Method Ontology (RRID:SCR_003373) Copy   

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http://purl.bioontology.org/ontology/IDOMAL

An application ontology to cover all aspects of malaria (clinical, epidemiological, biological, etc) as well as the intervention attempts to control it, extending the infectious disease ontology (IDO).

Proper citation: Malaria Ontology (RRID:SCR_003369) Copy   

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http://www.minituba.org

miniTUBA is a web-based modeling system that allows clinical and biomedical researchers to perform complex medical/clinical inference and prediction using dynamic Bayesian network analysis with temporal datasets. The software allows users to choose different analysis parameters (e.g. Markov lags and prior topology), and continuously update their data and refine their results. miniTUBA can make temporal predictions to suggest interventions based on an automated learning process pipeline using all data provided. Preliminary tests using synthetic data and laboratory research data indicate that miniTUBA accurately identifies regulatory network structures from temporal data. miniTUBA represents in a network view possible influences that occur between time varying variables in your dataset. For these networks of influence, miniTUBA predicts time courses of disease progression or response to therapies. minTUBA offers a probabilistic framework that is suitable for medical inference in datasets that are noisy. It conducts simulations and learning processes for predictive outcomes. The DBN analysis conducted by miniTUBA describes from variables that you specify how multiple measures at different time points in various variables influence each other. The DBN analysis then finds the probability of the model that best fits the data. A DBN analysis runs every combination of all the data; it examines a large space of possible relationships between variables, including linear, non-linear, and multi-state relationships; and it creates chains of causation, suggesting a sequence of events required to produce a particular outcome. Such chains of causation networks - are difficult to extract using other machine learning techniques. DBN then scores the resulting networks and ranks them in terms of how much structured information they contain compared to all possible models of the data. Models that fit well have higher scores. Output of a miniTUBA analysis provides the ten top-scoring networks of interacting influences that may be predictive of both disease progression and the impact of clinical interventions and probability tables for interpreting results. The DBN analysis that miniTUBA provides is especially good for biomedical experiments or clinical studies in which you collect data different time intervals. Applications of miniTUBA to biomedical problems include analyses of biomarkers and clinical datasets and other cases described on the miniTUBA website. To run a DBN with miniTUBA, you can set a number of parameters and constrain results by modifying structural priors (i.e. forcing or forbidding certain connections so that direction of influence reflects actual biological relationships). You can specify how to group variables into bins for analysis (called discretizing) and set the DBN execution time. You can also set and re-set the time lag to use in the analysis between the start of an event and the observation of its effect, and you can select to analyze only particular subsets of variables.

Proper citation: miniTUBA (RRID:SCR_003447) Copy   

•   Source: SciCrunch Registry

http://ncit.nci.nih.gov/

A reference terminology and core biomedical ontology for NCI that covers approximately 100,000 key biomedical concepts with terms, codes, definitions, and more than 200,000 inter-concept relationships. It is the reference terminology for NCI, NCI Metathesaurus and NCI informatics infrastructure covering vocabulary for clinical care, translational and basic research, and public information and administrative activities. It includes broad coverage of the cancer domain, including cancer related diseases, findings and abnormalities; anatomy; agents, drugs and chemicals; genes and gene products and so on. In certain areas, like cancer diseases and combination chemotherapies, it provides the most granular and consistent terminology available. It combines terminology from numerous cancer research related domains, and provides a way to integrate or link these kinds of information together through semantic relationships. NCIt features: * Stable, unique codes for biomedical concepts; * Preferred terms, synonyms, definitions, research codes, external source codes, and other information; * Links to NCI Metathesaurus and other information sources; * Over 200,000 cross-links between concepts, providing formal logic-based definition of many concepts; * Extensive content integrated from NCI and other partners, much available as separate NCIt subsets * Updated frequently by a team of subject matter experts. NCIt is a widely recognized standard for biomedical coding and reference, used by a broad variety of public and private partners both nationally and internationally including the Clinical Data Interchange Standards Consortium Terminology (CDISC), the U.S. Food and Drug Administration (FDA), the Federal Medication Terminologies (FMT), and the National Council for Prescription Drug Programs (NCPDP).

Proper citation: NCI Thesaurus (RRID:SCR_003563) Copy   

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https://www.calindex.org/

A three-year consortium that brings together insurers and health care providers to share information from approximately 9 million patients, with a goal that insights from the data will bring down healthcare costs and improve outcomes. It aims to be one of the largest health information exchanges in the country, with the goal of better connecting the vast, often disparate healthcare landscape across California. The database that will house patient data will be overseen by Orion Health, an independent eHealth software company. The information will only be used for clinical purposes. Academic research institutions can apply to use the Cal INDEX de-identified data for research to benefit the public good, such as population health initiatives. Cal INDEX has five main goals: * Improve the quality of care by providing clinicians with a unified statewide source of integrated patient information * Provide patients with a seamless transition between health plans or across various healthcare professionals and hospitals * Improve efficiency and reduce the cost of healthcare * Encourage healthcare technology innovation * Improve public health by providing de-identified data for medical research. Cal INDEX plans to launch at the end of 2014 with approximately 9 million health information records from combined members of Dignity Health and Blue Shield of California and Anthem Blue Cross. Cal INDEX is open to any health data contributor. Cal INDEX will establish a bi-directional data interface with providers to exchange data with EMRs and other hospital and office-based systems.

Proper citation: California Integrated Data Exchange (RRID:SCR_003747) Copy   

•   Source: SciCrunch Registry

http://www.aditecproject.eu/

A consortium that aims to accelerate the development of immunization technologies for the next generation of human vaccines. The goals are to characterize the mode of action and conduct comparative effectiveness studies of: adjuvants, vectors, formulations, delivery devices, routes of immunization, homologous and heterologous primeboost schedules, on vaccine efficacy. As part of these clinical trials, the consortium will also investigate the impact of host factors such as age, gender, genetics and pathologies. The consortium hopes to use insights gained from their projects to advance the development of next-generation vaccines, using tools such as standardized animal models to select promising immunization technologies. The intended outcome of this partnership is to improve the vaccine development process by advancing: basic research, new technology development, and clinical trial methods. Scientific objectives: # Development of adjuvants, vectors, formulations, and delivery devices # Selection of candidates, routes of immunization, and prime-boost combinations in animal models # Assessment of the impact of host factors in response to vaccination # Development of concepts and tools from human immunization # Development of concepts and tools to address regulatory and ethical issues posed by novel immunization technologies # Creation of an internationally recognized training program for translational immunology and vaccinology. Data is shared across the research partners within and between the different workstreams. Additionally, the consortium has plans to create a clinical database that combines phenotypic and clinical information to study the immune response to influenza vaccination at a population level, in an effort to advance studies into the effects of genetic background, gender, and disease on vaccine response.

Proper citation: Advanced Immunization Technologies (RRID:SCR_003741) Copy   

•   Source: SciCrunch Registry

http://www.abirisk.eu/

A consortium that seeks to provide an integrated approach to anti-drug immunization by evaluating immunogenicity in hemophilia A, multiple sclerosis, and inflammatory diseases, and exploring new tools for protein drug immunogenicity. The data collected will be pooled in a single immunogenicity databank and will be standardized and used to develop models of anti-drug antibodies. By examining the correlation between patient and clinical factors and the incidence of immunogenicity, it hopes to reduce the regulatory and resource burdens of immunogenicity testing. The objectives of the consortium are: # Access to large cohorts of patients treated with marketed biopharmaceutical products # Complementary expertise for anti-drug antibodies (ADA) assays; standardization and characterization of ADA # Novel integrated approaches to characterize anti-drug lymphocyte responses # Development and validation of innovative prediction tools # Collection and integration of immunogenicity-related data and clinical relevance of ADA ABIRISK is grouped into five working projects, which communicate with one another and provide each other with results and data for analysis. The five working projects are: ADA assay development and validation and cohort management; cellular characterization and mechanisms of the AD immune response; evaluation and development of technologies for predicting immunogenicity; establishment of database, data analyses and integration; and project management and communication.

Proper citation: ABIRISK (RRID:SCR_003740) Copy   

•   Source: SciCrunch Registry

http://www.imi.europa.eu/content/eu-aims

Consortium aiming to generate tools that will enhance understanding of autism spectrum disorders (ASD) and pave the way for the development of new, safe and effective treatments for use in both children and adults. For example, the team will gather samples from people bearing certain mutations associated with ASD; this will pave the way for the generation of cell lines that can be used to test treatments. Elsewhere, the researchers will advance the use of brain scans as a tool to boost ASD drug discovery and also identify which people with ASD might respond best to a given drug. The project will also create a pan-European network of clinical sites. As well as making it easier to run clinical trials, this network will create an interactive platform for those with ASD and professionals. By the end of the 5 year project they expect to provide novel validated cellular assays, animal models, new fMRI methods with dedicated analysis techniques, new PET radioligands, as well as new genetic and proteomic biomarkers for patient-segmentation or individual response prediction. They will provide a research network that can rapidly test new treatments in man. These tools should provide their EFPIA partners with an added competitive advantage in developing new drugs for ASD.

Proper citation: EU-AIMS (RRID:SCR_003861) Copy   

•   Source: SciCrunch Registry

http://earip.eu/

Consortium that convenes asthma experts from across Europe to define research gaps to reduce the impact of asthma. The project activities range from basic cell science research, to assessing and improving European healthcare systems. Their activities include workshops, prioritization exercises, consensus strategies, and the development and publication of a set of recommendations about what's needed to reduce asthma deaths and hospitalizations. The eventual goal is to have a comprehensive R&D roadmap for asthma. EARIP will target a number of asthma research areas to ensure a comprehensive overview of all current research strategies from across Europe is included in the project road map. These include: * Research into biological targets, aiming to discover new targets and better define the role of existing biological targets * Identify new systems, models and tools for phenotypic stratification * Develop better and more efficient healthcare systems across Europe * Define and develop new diagnostic tools * Assess and improve patient self-management systems and provide suggestions for how these can be developed * Identify how to establish a European Innovation Partnership (EIP) for the management of asthma * Establish a European research network of clinical asthma research facilities

Proper citation: EARIP (RRID:SCR_003854) Copy   

•   Source: SciCrunch Registry

http://www.oncotrack.eu/

An international consortium to develop and assess novel approaches to identify and characterize biological markers for colon cancer that will deepen the understanding of the variable make-up of tumors and how this affects the way patients respond to treatment. They will use cutting edge laboratory-based genome sequencing techniques coupled to novel computer modelling approaches to study both the biological heterogeneity of colon cancers (i.e. patient to patient variability) as well as tumor variation within the patient for example, by comparing primary tumors with metastases. This five year project brings together top scientists from European academic institutions offering a wide range of expertise, and partners them with pharmaceutical companies. The project is based on the premise that this genetic and epigenetic information, combined with a description of the molecular pathology of the tumor, will allow OncoTrack to generate a more accurate in-silico model of the cancer cell. This will facilitate the identification of predictive markers that can be used to guide the optimal therapy strategy at the level of the individual patient - and will also provide on-going prognostic guidance for the clinician. This project will not only advance understanding of the fundamental biology of colon cancers but will provide the means and approach for the identification of previously undetected biomarkers not only in the cancer under study, but potentially also in other solid cancers and, in doing so, open the door for personalized management of the oncology patient.

Proper citation: OncoTrack (RRID:SCR_003767) Copy   

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http://c-path.org/programs/pkd/

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

Proper citation: Polycystic Kidney Disease Outcomes Consortium (RRID:SCR_003674) Copy   

•   Source: SciCrunch Registry