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Found 15 result(s)

CaPSURE

Cancer of the Prostate Strategic Urologic Research Endeavor

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CaPSURE™ is a longitudinal, observational study of approximately 15,000 men with all stages of biopsy-proven prostate cancer. Patients have enrolled at 43 community urology practices, academic medical centers, and VA hospitals throughout the United States since 1995. CEASAR stands for Comparative Effectiveness Analysis of Surgery and Radiation. The ongoing goal of CEASAR is to help learn more about what prostate cancer treatments work best, for which patients, in whose hands. There are currently about 3,600 men with a prostate cancer diagnosis participating in CEASAR. Three rounds of surveys have been completed, with the first carried out in the spring of 2010. We are currently in the process of conducting our fourth survey with the same group of men in our study. This survey, our Three Year Follow-up, will occur throughout the summer of 2014.

The Health Improvement Network

THIN

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THIN is a medical data collection scheme that collects anonymised patient data from its members through the healthcare software Vision. The UK Primary Care database contains longitudinal patient records for approximately 6% of the UK Population. The anonymised data collection, which goes back to 1994, is nationally representative of the UK population.

International Clinical Trials Registry Platform

ICTRP

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The global scientific community, international partners, the private sector, civil society, and other relevant stakeholders establish a voluntary platform to link clinical trials registers in order to ensure a single point of access and the unambiguous identification of trials with a view to enhancing access to information by patients, families, patient groups and others.

PRO-ACT

Pooled Resource Open-Access ALS Clinical Trials Database

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The PRO-ACT platform houses the largest ALS clinical trials dataset ever created. It is a powerful tool for biomedical researchers, statisticians, clinicians, or anyone else interested in "Big Data." PRO-ACT merges data from existing public and private clinical trials, generating an invaluable resource for the design of future ALS clinical trials. The database will also contribute to the identification of unique observations, novel correlations, and patterns of ALS disease progression, as well as a variety of still unconsidered analyses. More than 600,000 people around them world are battling ALS. The disease strikes indiscriminately, and typically patients will die within 2-5 years following diagnosis. Currently, there are no effective treatments or a cure for ALS. Users of PRO-ACT are helping to accelerate the discovery, development, and delivery of ALS treatments, which will provide hope to patients and their families.

The Neuro C-BIG Repository Data Portal (Beta)

C-BIG Repository Data Portal - Beta Version

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An Open Science resource that promotes scientific research and discovery in neurological diseases and accelerates the development of new treatments. It includes a growing collection of biospecimens, longitudinal clinical and neuropsychiatric information, imaging and genetic data from patients with neurological disease as well as healthy controls.

Project Data Sphere

PDS

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Project Data Sphere, LLC, operates a free digital library-laboratory where the research community can broadly share, integrate and analyze historical, de-identified, patient-level data from academic and industry cancer Phase II-III clinical trials. These patient-level datasets are available through the Project Data Sphere platform to researchers affiliated with life science companies, hospitals and institutions, as well as independent researchers, at no cost and without requiring a research proposal.

freeBIRD

free Bank of Injury and Emergency Research Data

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The FREEBIRD website aims to facilitate data sharing in the area of injury and emergency research in a timely and responsible manner. It has been launched by providing open access to anonymised data on over 30,000 injured patients (the CRASH-1 and CRASH-2 trials).

YODA Project

Yale University Open Data Access

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The YODA Project is an effort by a group of academically-based clinical researchers to facilitate access to participant-level clinical research data and/or comprehensive reports of clinical research, such as full Clinical Study Reports (CSRs), a level of detail not customarily found in journal publications, with the aim of promoting scientific research that may advance science or lead to improvements in individual and public health and healthcare delivery. The YODA Project is guided by the following core principles, which reflect the overall mission of the project to promote open science by: Promoting the sharing of clinical research data to advance science and improve public health and healthcare, Promoting the responsible conduct of research, Ensuring good stewardship of clinical research data, and Protecting the rights of research participants

RAMEDIS

Rare Metabolic Diseases Database

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The RAMEDIS system is a platform independent, web-based information system for rare metabolic diseases based on filed case reports. It was developed in close cooperation with clinical partners to allow them to collect information on rare metabolic diseases with extensive details, e.g. about occurring symptoms, laboratory findings, therapy and molecular data.

BBMRI-ERIC Directory

Directory of Biobanks

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BBMRI-ERIC is a European research infrastructure for biobanking. We bring together all the main players from the biobanking field – researchers, biobankers, industry, and patients – to boost biomedical research. To that end, we offer quality management services, support with ethical, legal and societal issues, and a number of online tools and software solutions. Ultimately, our goal is to make new treatments possible. The Directory is a tool to share aggregate information about the biobanks that are willing external collaboration. It is based on the MIABIS 2.0 standard, which describes the samples and data in the biobanks at an aggregated level.

National Cancer Data Base

NCDB

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The nationally recognized National Cancer Database (NCDB)—jointly sponsored by the American College of Surgeons and the American Cancer Society—is a clinical oncology database sourced from hospital registry data that are collected in more than 1,500 Commission on Cancer (CoC)-accredited facilities. NCDB data are used to analyze and track patients with malignant neoplastic diseases, their treatments, and outcomes. Data represent more than 70 percent of newly diagnosed cancer cases nationwide and more than 34 million historical records.

Signature Bank

Banque Signature

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One of the world’s largest banks of biological, psychosocial and clinical data on people suffering from mental health problems. The Signature center systematically collects biological, psychosocial and clinical indicators from patients admitted to the psychiatric emergency and at four points throughout their journey in the hospital: upon arrival to the emergency room (state of crisis), at the end of their hospital stay, as well as at the beginning and the end of outpatient treatment. For all hospital clients who agree to participate, blood specimens are collected for the purpose of measuring metabolic, genetic, toxic and infectious biomarkers, while saliva samples are collected to measure sex hormones and hair samples are collected to measure stress hormones. Questionnaire has been selected to cover important dimensional aspects of mental illness such as Behaviour and Cognition (Psychosis, Depression, Anxiety, Impulsiveness, Aggression, Suicide, Addiction, Sleep),Socio-demographic Profile (Spiritual beliefs, Social functioning, Childhood experiences, Demographic, Family background) and Medical Data (Medication, Diagnosis, Long-term health, RAMQ data). On 2016, May there are more than 1150 participants and 400 for the longitudinal Follow-Up

Vivli

A global clinical research data sharing platform

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Vivli is a non-profit organization working to advance human health through the insights and discoveries gained by sharing and analyzing data. It is home to an independent global data-sharing and analytics platform which serves all elements of the international research community. The platform includes a data repository, in-depth search engine and cloud-based analytics, and harmonizes governance, policy and processes to make sharing data easier. Vivli acts as a neutral broker between data contributor and data user and the wider data sharing community.

Follicular Lymphoma Genome Data at Canada's Michael Smith Genome Sciences Centre (BCGSC)

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<<<!!!<<< Genome data generated by BC Genome Sciences Centre is no longer available through this site as it is regularly deposited into controlled data repositories such as the European Genome Phenome Archive (EGA); ICGC (International Cancer Genome Consortium) and the Genome Data Commons (GDC) >>>!!!>>> Mapping, copy number analysis, sequence and gene expression data generated by the High Resolution Analysis of Follicular Lymphoma Genomes project. The data will be available for 24 patients with follicular lymphoma. All data will be made as widely and freely available as possible while safeguarding the privacy of participants, and protecting confidential and proprietary data.The data from this project will be submitted to public genomic data sources. These sources will be listed on this web site as the data becomes available in these external data sources.

PAIN repository

Pain and Interoception Imaging Network Repository

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The PAIN Repository is a recently funded NIH initiative, which has two components: an archive for already collected imaging data (Archived Repository), and a repository for structural and functional brain images and metadata acquired prospectively using standardized acquisition parameters (Standardized Repository) in healthy control subjects and patients with different types of chronic pain. The PAIN Repository provides the infrastructure for storage of standardized resting state functional, diffusion tensor imaging and structural brain imaging data and associated biological, physiological and behavioral metadata from multiple scanning sites, and provides tools to facilitate analysis of the resulting comprehensive data sets.