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Found 9 result(s)

Fox Insight Date Exploration Network

Fox DEN

Subject(s)
Content type(s)
Country
Fox DEN provides investigators with a tool to explore, download and apply statistical models on aggregated data collected for the Fox Insight online clinical study. The Fox Insight study collects patient-reported outcomes and genetic data from people with Parkinson's disease and their loved ones.

Zentrum für Klinische Studien der Universität zu Köln

Clinical Trials Center Cologne

Subject(s)
Content type(s)
Country
The Centre for Clinical Trials Cologne (Köln ZKS) aims to support all processes of clinical trials and the quality of patient-oriented clinical research in an academic environment. It supports doctors of University Hospital of Cologne, other clinics, study groups and professional associations in the design and conduct of clinical trials. For the pharmaceutical industry and contract research organizations, the ZKS Köln is a clinic near partner for medical research projects.

International Clinical Trials Registry Platform

ICTRP

Subject(s)
Content type(s)
Country
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.

Swiss HIV Cohort Study & Swiss Mother and Child HIV Cohort Study

SHCS & MoCHIV

Subject(s)
Content type(s)
Country
The Swiss HIV Cohort Study (SHCS), established in 1988, is a systematic longitudinal study enrolling HIV-infected individuals in Switzerland. It is a collaboration of all Swiss University Hospital infectious disease outpatient clinics, two large cantonal hospitals, all with affiliated laboratories, and with affiliated smaller hospitals and private physicians carrying for HIV patients. The Swiss Mother and Child HIV Cohort Study (MoCHiV) is integrated into the SHCS. It aims at preventing mother to child transmission and enrolls HIV-infected pregnant women and their children. The SHCS involves practically all researchers being active in patient-oriented HIV research in Switzerland. The clinics can delegate recruitment of participants and follow-up visits to other outpatient clinics or to specialized private physicians, provided that the requirements of the protocol can be entirely fulfilled and controlled. The laboratories can contract other laboratories for some of the analyses.

University Hospital Medical Information Network Individual Case Data Repository

UMIN-CTR

Subject(s)
Content type(s)
Country
The UMIN case data repository system was implemented by adding a function to the UMIN Clinical Trials Registry System. The aim of this system is to keep anonymized case data from clinical research conducted by individual researchers at the UMIN center, and to guarantee the content of the data to third parties. This system enables other researchers to inspect case data or to repeat statistical analyses

PROFILES Registry

Subject(s)
Content type(s)
Country
Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)’ is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. Researchers from the Netherlands Comprehensive Cancer Centre and Tilburg University in Tilburg, The Netherlands, work together with medical specialists from national hospitals in order to setup different PROFILES studies, collect the necessary data, and present the results in scientific journals and (inter)national conferences.

CancerModels.Org

formerly; Patients-derived tumor xenograft finder

Subject(s)
Content type(s)
Country
Patients-derived tumor xenograft (PDX) mouse models are an important oncology research platform to study tumor evolution, drug response and personalised medicine approaches. We have expanded to organoids and cell lines and are now called CancerModels.Org

German Central Health Study Hub

Subject(s)
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The German Central Health Study Hub is a platform that serves two different kinds of users. First, it allows scientists and data holding organizations (data producers) to publish their project characteristics, documents and data related to their research endeavour in a FAIR manner. Obviously, patient-level data cannot be shared publicly, however, metadata describing the patient-level data along with information about data access can be shared via the platform (preservation description information). The other kind of user is a scientist or researcher (data consumer) that likes to find information about past and ongoing studies and is interested in reusing existing patient-level data for their project. To summarize, the platforms connect data providers with data consumers in the domain of clinical, public health and epidemiologic health research to foster reuse. The platform aggregates and harmonizes information already entered in various public repositories such as DRKS, clinicaltrials.gov, WHO ICTRP to provide a holistic view of the German research landscape in the aforementioned research areas. In addition, data stewards actively collect available information from (public) resources such as websites that cannot be automatically integrated. The service started during the COVID-19 pandemic.

The European Genome-phenome Archive

EGA

Subject(s)
Content type(s)
Country
The European Genome-phenome Archive (EGA) is designed to be a repository for all types of sequence and genotype experiments, including case-control, population, and family studies. We will include SNP and CNV genotypes from array based methods and genotyping done with re-sequencing methods. The EGA will serve as a permanent archive that will archive several levels of data including the raw data (which could, for example, be re-analysed in the future by other algorithms) as well as the genotype calls provided by the submitters. We are developing data mining and access tools for the database. For controlled access data, the EGA will provide the necessary security required to control access, and maintain patient confidentiality, while providing access to those researchers and clinicians authorised to view the data. In all cases, data access decisions will be made by the appropriate data access-granting organisation (DAO) and not by the EGA. The DAO will normally be the same organisation that approved and monitored the initial study protocol or a designate of this approving organisation. The European Genome-phenome Archive (EGA) allows you to explore datasets from genomic studies, provided by a range of data providers. Access to datasets must be approved by the specified Data Access Committee (DAC).