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http://www.cdisc.org/

A global, open, multidisciplinary, non-profit organization that has established standards to support the acquisition, exchange, submission and archive of clinical research data and metadata. Its mission is to develop and support global, platform-independent data standards that enable information system interoperability to improve medical research and related areas of healthcare. CDISC standards are vendor-neutral, platform-independent and freely available via the CDISC website.

Proper citation: Clinical Data Interchange Standards Consortium (RRID:SCR_000219) Copy   

•   Source: SciCrunch Registry

http://knightadrc.wustl.edu/

The Charles F. and Joanne Knight Alzheimer Disease Research Center (Knight ADRC) supports researchers and our surrounding community in their pursuit of answers that will lead to improved diagnosis and care for persons with Alzheimer disease (AD). The Center is committed to the long-term goal of finding a way to effectively treat and prevent AD. The Knight ADRC facilitates advanced research on the clinical, genetic, neuropathological, neuroanatomical, biomedical, psychosocial, and neuropsychological aspects of Alzheimer disease, as well as other related brain disorders.

Proper citation: Washington University School of Medicine Knight Alzheimers Disease Research Center (RRID:SCR_000210) Copy   

•   Source: SciCrunch Registry

https://www.qcif.edu.au/

Provides digital infrastructure capabilities for research and innovation across Queensland and Australia. Provides services, infrastructure and support for computation and data driven collaborative research and its application in industry. Members are six Queensland universities – The University of Queensland, Queensland University of Technology, Griffith University, James Cook University, CQUniversity, and the University of Southern Queensland. The University of the Sunshine Coast is an associate member. Member employees provide support and development services.

Proper citation: Queensland Cyber Infrastructure Foundation Ltd (RRID:SCR_000208) Copy   

•   Source: SciCrunch Registry

http://cbrain.mcgill.ca/loris

A modular and extensible web-based data management system that integrates all aspects of a multi-center study, from heterogeneous data acquisition to storage, processing and ultimately dissemination, within a streamlined platform. Through a standard web browser, users are able to perform a wide variety of tasks, such as data entry, 3D image visualization and data querying. LORIS also stores data independently from any image processing pipeline, such that data can be processed by external image analysis software tools. LORIS provides a secure web-based and database-driven infrastructure to automate the flow of clinical data for complex multi-site neuroimaging trials and studies providing researchers with the ability to easily store, link, and access significant quantities of both scalar (clinical, psychological, genomic) and multi-dimensional (imaging) data. LORIS can collect behavioral, neurological, and imaging data, including anatomical and functional 3D/4D MRI models, atlases and maps. LORIS also functions as a project monitoring and auditing platform to oversee data acquisition across multiple study sites. Confidentiality during multi-site data sharing is provided by the Subject Profile Management System, which can perform automatic removal of confidential personal information and multiple real-time quality control checks. Additionally, web interactions with the LORIS portal take place over an encrypted channel via SSL, ensuring data security. Additional features such as Double Data Entry and Statistics and Data Query GUI are included.

Proper citation: LORIS - Longitudinal Online Research and Imaging System (RRID:SCR_000590) Copy   

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http://www.du.edu/psychology/

The department of psychology at Denver University that offers degrees at the undergraduate, graduate and doctoral level. The doctoral programs have specializations such as Affect/Social, Child Clinical, Cognitive, and Developmental.

Proper citation: Denver University Department of Psychology (RRID:SCR_000474) Copy   

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http://www.ecnp.eu/

A pan-European scientific association to encourage research across the neurosciences and to translate new knowledge on fundamental disease mechanisms into new medicines and clinical applications. As an interdisciplinary forum for the science and treatment of disorders of the brain, they promote the communication and cross- fertilization of high-quality experimental and clinical research across the field of neuroscience. ECNP is a non-profit member-based association, independently governed and self-funded. ECNP is a public-interest-serving entity.

Proper citation: ECNP (RRID:SCR_000501) Copy   

•   Source: SciCrunch Registry

http://www.hl7.org/index.cfm?ref=nav

ANSI-accredited standards developing organization providing a comprehensive framework and related standards for the exchange, integration, sharing, and retrieval of electronic health information that supports clinical practice and the management, delivery and evaluation of health services. HL7's 2,300+ members include approximately 500 corporate members who represent more than 90% of the information systems vendors serving healthcare. HL7 provides standards for interoperability that improve care delivery, optimize workflow, reduce ambiguity and enhance knowledge transfer among all of their stakeholders, including healthcare providers, government agencies, the vendor community, fellow SDOs and patients.

Proper citation: Health Level Seven International (RRID:SCR_000466) Copy   

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https://nei.nih.gov/health/clinicalstudies/

An archived portal of clinical studies, both ongoing and completed, that have been conducted and supported by the National Eye Institute (NEI) since 1970. The portal covers corneal diseases, glaucoma, epidemiology, lens and cataract, retinal diseases, strabismus, amblyopia and visual processing.

Proper citation: NEI Clinical Studies (RRID:SCR_000546) Copy   

•   Source: SciCrunch Registry

http://www.nitrc.org/projects/atp

Autism research program that makes available post-mortem brain tissue to qualified scientists all over the world. Working directly with tissue banks, organ procurement agencies, medical examiners and the general public, this is the largest program dedicated to increasing and enhancing the availability of post-mortem brain tissue for basic research in autism. To date, the ATP has collected and stored more than 170 brains in their repositories at Harvard (US) and Oxford (UK). These brains are processed by formalin fixation and/or snap frozen to properly provide high quality tissue of all brain regions, in support of biological research in autism. The ATP is unique in that they diligently pursue all available clinical data (pre and post mortem) on tissue donors in order to create the most biologically relevant brain repository for autism research. These data, together with tissue resources from both banks and associated repositories, are presented to all interested researchers through their extensive web-based data portal (login required). The ATP is not a brain bank, but works directly with the Harvard Brain Tissue Resource Center in Boston (HBTRC), Massachusetts to serve as its tissue repository. This program augments brain bank functions by: * Creating the most biologically relevant brain tissue repository possible * Fully covering all costs associated with brain extraction and transfer to the repositories at Harvard (US and Canada) and Oxford (UK). * Providing scientific oversight of tissue distributions * Overseeing and managing all tissue grants * Clinically phenotyping and acquiring extensive medical data on all of their donors * Providing continuing family support and communication to all of their donors * Directly supporting researchers to facilitate autism research * Maintaining a robust web based data management and secure on-line global interface system * Developing and supporting ATP established scientific initiatives * Actively providing public outreach and education The ATP is not a clinical organ procurement agency, but rather they facilitate the wishes of donors and families to donate their tissue to autism research. Through the ATP's established international infrastructure, they work with any accredited tissue bank, organ procurement agency, or medical examiner that receives a family's request to donate their loved one's tissue to the program. Once contacted, the ATP will insure that the family's request to donate their loved one's tissue is faithfully met, covering all costs to the family and partnering agency as well as ensuring the tissues' proper and rapid transport to the ATP's repository at the Harvard Brain Tissue Resource Center (HBTRC) in Boston, Massachusetts.

Proper citation: Autism Tissue Program (RRID:SCR_000651) Copy   

•   Source: SciCrunch Registry

http://cvrl.ioo.ucl.ac.uk/index.htm

The Colour & Vision Research laboratory and database are based at the Institute of Ophthalmology, which is part of University College London. The Institute and CVRL are both closely associated with Moorfields Eye Hospital. The Institute is next door to Moorfields Eye Hospital near Old Street tube station (see directions). At the Colour & Vision Research laboratory, we investigate normal and clinical human visual perception. Our research focuses on questions about colour perception, light and dark adaptation, night-time vision, and the temporal and spatial properties of vision. Our primary goal is to understand the nature of the mechanisms that underlie visual perception, and to understand how those mechanism malfunction in clinical cases. More details about our research can be found by looking at the publications of members of the laboratory. The CVRL database, first set up in 1995, provides an annotated library of downloadable standard data sets relevant to colour and vision research. The focus of this site is primarily scientific and technical, but some introductory background information is also provided. A consistent set of functions for modeling colour vision based on the Stockman & Sharpe cone fundamentals and on our more recent luminous efficiency measurements are summarized under the category CVRL functions. These functions are tabulated in 0.1, 1 and 5 nm steps and can be returned as csv, xml, or tabular data or as dynamic plots. The Stockman & Sharpe cone fundamentals are the basis of a CIE proposal for physiologically-relevant colour matching functions. These functions, which are indentical to the CVRL functions, are summarized under the category CIE 2007 functions. The CIE functions are also tabulated in 0.1, 1 and 5 nm steps, and can also be returned as csv, xml, or tabular data or as dynamic plots. Significant additions to the database are the individual colour matching measurements made by Stiles & Burch. These have been compiled and cross-checked with the help of Boris Oicherman, Alexander Logvinenko, and Abhijit Sarkar from hard copies of the original data provided by Pat Trezona and Mike Webster. They can be obtained as Excel files and are available for both 2 and 10 colour matches. Other data sets, which are provided as csv files, include cone fundamentals, colour matching functions, chromaticity coordinates, prereceptoral filter density spectra, photopigment spectra, and CIE standards. Many of these data sets can also be viewed as dynamic plots. Sponsors: CVRL is funded by BBSRC The Wellcome Trust, Fight for Sight, National Eye Institute, and NIH.

Proper citation: Colour and Vision Research Laboratory (RRID:SCR_000770) Copy   

•   Source: SciCrunch Registry

http://ctri.nic.in/Clinicaltrials/login.php

Free, online public record system for registration of clinical trials being conducted in India. Initiated as a voluntary measure, trial registration in the CTRI has been made mandatory by the Drugs Controller General (India) (DCGI) (http://www.cdsco.nic.in/). Moreover, Editors of Biomedical Journals of 11 major journals of India declared that only registered trials would be considered for publication. Today, any researcher who plans to conduct a trial involving human participants, of any intervention such as drugs, surgical procedures, preventive measures, lifestyle modifications, devices, educational or behavioral treatment, rehabilitation strategies as well as trials being conducted in the purview of the Department of AYUSH (http://indianmedicine.nic.in/) is expected to register the trial in the CTRI before enrollment of the first participant. Trial registration involves public declaration and identification of trial investigators, sponsors, interventions, patient population etc before the enrollment of the first patient. Submission of Ethics approval and DCGI approval (if applicable) is essential for trial registration in the CTRI. Multi-country trials, where India is a participating country, which have been registered in an international registry, are also expected to be registered in the CTRI. In the CTRI, details of Indian investigators, trial sites, Indian target sample size and date of enrollment are captured. After a trial is registered, trialists are expected to regularly update the trial status or other aspects as the case may be. After a trial is registered, all updates and changes will be recorded and available for public display. The CTRI is working with the WHO ICTRP to ensure that results of all trials registered with the CTRI are adequately reported and publicly available.

Proper citation: Clinical Trials Registry - India (RRID:SCR_000679) Copy   

•   Source: SciCrunch Registry

http://www.bumc.bu.edu/cardiovascularproteomics/

The Cardiovascular Proteomics Center is a research center funded by the NIH/NHLBI to analyze and identify proteins that may be modified or created by oxidative stress. The CPC is developing and applying new proteomics methodology and instrumentation to the analysis of known proteins and those yet to be discovered.

Proper citation: Cardiovascular Proteomics Center (RRID:SCR_000603) Copy   

•   Source: SciCrunch Registry

http://coins.mrn.org/

A web-based neuroimaging and neuropsychology software suite that offers versatile, automatable data upload/import/entry options, rapid and secure sharing of data among PIs, querying and export all data, real-time reporting, and HIPAA and IRB compliant study-management tools suitable to large institutions as well as smaller scale neuroscience and neuropsychology researchers. COINS manages over over 400 studies, more than 265,000 clinical neuropsychological assessments, and 26,000 MRI, EEG, and MEG scan sessions collected from 18,000 participants at over ten institutions on topics related to the brain and behavior. As neuroimaging research continues to grow, dynamic neuroinformatics systems are necessary to store, retrieve, mine and share the massive amounts of data. The Collaborative Informatics and Neuroimaging Suite (COINS) has been created to facilitate communication and cultivate a data community. This tool suite offers versatile data upload/import/entry options, rapid and secure sharing of data among PIs, querying of data types and assessments, real-time reporting, and study-management tools suitable to large institutions as well as smaller scale researchers. It manages studies and their data at the Mind Research Network, the Nathan Kline Institute, University of Colorado Boulder, the Olin Neuropsychiatry Research Center (at) Hartford Hospital, and others. COINS is dynamic and evolves as the neuroimaging field grows. COINS consists of the following collaboration-centric tools: * Subject and Study Management: MICIS (Medical Imaging Computer Information System) is a centralized PostgreSQL-based web application that implements best practices for participant enrollment and management. Research site administrators can easily create and manage studies, as well as generate reports useful for reporting to funding agencies. * Scan Data Collection: An automated DICOM receiver collects, archives, and imports imaging data into the file system and COINS, requiring no user intervention. The database also offers scan annotation and behavioral data management, radiology review event reports, and scan time billing. * Assessment Data Collection: Clinical data gathered from interviews, questionnaires, and neuropsychological tests are entered into COINS through the web application called Assessment Manager (ASMT). ASMT's intuitive design allows users to start data collection with little or no training. ASMT offers several options for data collection/entry: dual data entry, for paper assessments, the Participant Portal, an online tool that allows subjects to fill out questionnaires, and Tablet entry, an offline data entry tool. * Data Sharing: De-identified neuroimaging datasets with associated clinical-data, cognitive-data, and associated meta-data are available through the COINS Data Exchange tool. The Data Exchange is an interface that allows investigators to request and share data. It also tracks data requests and keeps an inventory of data that has already been shared between users. Once requests for data have been approved, investigators can download the data directly from COINS.

Proper citation: Mind Research Network - COINS (RRID:SCR_000805) Copy   

•   Source: SciCrunch Registry

http://www.imi-getreal.eu/

Consortium that aims to improve the efficiency of the medicine development process by better incorporating estimates of relative effectiveness into drug development and to enrich decision-making by regulatory authorities and health technology assessment (HTA) bodies through: * Bringing together regulators, HTA bodies, academics, companies, patients and other societal stakeholders; * Assessing existing processes, methodologies, and key research issues; * Proposing innovative (and more pragmatic) trial designs and assessing the value of information; * Proposing and testing innovative analytical and predictive modelling approaches; * Assessing operational, ethical, regulatory issues and proposing and testing solutions; * Creating new decision making frameworks, and building open tools to allow for the evaluation of development programs and use in the assessment of the value of new medicines; * Sharing and discussing deliverables with, among others, Pharmaceutical companies, regulatory authorities, HTA / reimbursement agencies, clinicians and patient organizations; * Developing training activities for researchers, decision makers and societal stakeholders in the public and private sector in order to increase knowledge about various aspects of relative effectiveness. The expected impact is that it will contribute to the knowledge base, particularly to inform clinical decision making and improve the efficiency of the R&D process. GETREAL will help to generate a consensus on best practice in the timing, performance and use of real life clinical studies in regulatory and reimbursement decision-making. It will also help to create a strong platform for the communication of results and for future discussions in this important area.

Proper citation: GetReal (RRID:SCR_003862) Copy   

•   Source: SciCrunch Registry

http://www.asiancancerresearchgroup.org/

An independent, not-for-profit consortium to accelerate research, and improve treatment for patients affected with the most commonly-diagnosed cancers in Asia by generating a genomic data resource for the most prevalent cancers in Asia. ACRG is focusing its initial efforts on Asian liver, gastric and lung cancers. Goals * Generate comprehensive genomics data sets for Asia-prevalent cancers * Conduct all research under good clinical practices and in accordance with local laws * Uncover key mutations and pathways for developing targeted therapies * Discover molecular tumor classifiers for patient stratification * Discover prognostic markers to identify high-risk patients * Freely share resulting raw data with scientific community to empower researchers globally and enable development of new diagnostics and medicines * Publish data analysis results jointly in prominent scientific journals Over the next two years, Lilly, Merck and Pfizer have committed to create an extensive pharmacogenomic cancer database that will be composed of data from approximately 2,000 tissue samples from patients with lung and gastric cancer that will be made publicly available to researchers and, over time, further populated with clinical data from a longitudinal analysis of patients. Comparison of the contrasting genomic signatures of these cancers could inform new approaches to treatment. Lilly has assumed responsibility for ultimately providing the data to the research public through an open-source concept managed by Lilly''''s Singapore research site. Moreover, Lilly, Merck and Pfizer will each provide technical and intellectual expertise. One dataset can be found at http://gigadb.org/dataset/100034

Proper citation: Asian Cancer Research Group (RRID:SCR_004001) Copy   

•   Source: SciCrunch Registry

http://humanconnectome.org/connectome/connectomeDB.html

Data management platform that houses all data generated by the Human Connectome Project - image data, clinical evaluations, behavioral data and more. ConnectomeDB stores raw image data, as well as results of analysis and processing pipelines. Using the ConnectomeDB infrastructure, research centers will be also able to manage Connectome-like projects, including data upload and entry, quality control, processing pipelines, and data distribution. ConnectomeDB is designed to be a data-mining tool, that allows users to generate and test hypotheses based on groups of subjects. Using the ConnectomeDB interface, users can easily search, browse and filter large amounts of subject data, and download necessary files for many kinds of analysis. ConnectomeDB is designed to work seamlessly with Connectome Workbench, an interactive, multidimensional visualization platform designed specifically for handling connectivity data. De-identified data within ConnectomeDB is publicly accessible. Access to additional data may be available to qualified research investigators. ConnectomeDB is being hosted on a BlueArc storage platform housed at Washington University through the year 2020. This data platform is based on XNAT, an open-source image informatics software toolkit developed by the NRG at Washington University. ConnectomeDB itself is fully open source.

Proper citation: ConnectomeDB (RRID:SCR_004830) Copy   

•   Source: SciCrunch Registry

http://alzheimers.med.umich.edu/

An Alzheimer's disease center which aims to conduct and promote research on Alzheimer's disease and enhance public and professional understanding of dementia through education and outreach efforts. The MADC promotes clinical research on memory and aging which involves the direct use of research volunteers, biomarkers, and other clinical data collected through the University of Michigan Memory and Aging Project.

Proper citation: Michigan Alzheimer's Disease Center (RRID:SCR_008773) Copy   

•   Source: SciCrunch Registry

https://nidagenetics.org/

Site for collection and distribution of clinical data related to genetic analysis of drug abuse phenotypes. Anonymous data on family structure, age, sex, clinical status, and diagnosis, DNA samples and cell line cultures, and data derived from genotyping and other genetic analyses of these clinical data and biomaterials, are distributed to qualified researchers studying genetics of mental disorders and other complex diseases at recognized biomedical research facilities. Phenotypic and Genetic data will be made available to general public on release dates through distribution mechanisms specified on website.

Proper citation: National Institute on Drug Abuse Center for Genetic Studies (RRID:SCR_013061) Copy   

•   Source: SciCrunch Registry

https://kidsfirstdrc.org/portal/portal-features/

Portal for analysis and interpretation of pediatric genomic and clinical data to advance personalized medicine for detection, therapy, and management of childhood cancer and structural birth defects. For patients, researchers, and clinicians to create centralized database of well curated clinical and genetic sequence data from patients with childhood cancer or structural birth defects.

Proper citation: Kids First Data Resource Portal (RRID:SCR_016493) Copy   

•   Source: SciCrunch Registry

http://yh.genomics.org.cn

This database presents the entire DNA sequence of the first diploid genome sequence of a Han Chinese, a representative of Asian population. The genome, named as YH, represents the start of YanHuang Project, which aims to sequence 100 Chinese individuals in 3 years. It was assembled based on 3.3 billion reads (117.7Gbp raw data) generated by Illumina Genome Analyzer. In total of 102.9Gbp nucleotides were mapped onto the NCBI human reference genome (Build 36) by self-developed software SOAP (Short Oligonucleotide Alignment Program), and 3.07 million SNPs were identified. The personal genome data is illustrated in a MapView, which is powered by GBrowse. A new module was developed to browse large-scale short reads alignment. This module enabled users track detailed divergences between consensus and sequencing reads. In total of 53,643 HGMD recorders were used to screen YH SNPs to retrieve phenotype related information, to superficially explain the donor's genome. Blast service to align query sequences against YH genome consensus was also provided.

Proper citation: YanHuang Project (RRID:SCR_006077) Copy   

•   Source: SciCrunch Registry