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TRAILS is a prospective cohort study, which started in 2001 with population cohort and 2004 with a clinical cohort (CC). Since then, a group of 2500 young people from the Northern part of the Netherlands has been closely monitored in order to chart and explain their mental, physical, and social development. These TRAILS participants have been measured every two to three years, by means of questionnaires, interviews, and all kinds of tests. By now, we have collected information that spans the total period from preadolescence up until young adulthood. One of the main goals of TRAILS is to contribute to the knowledge of the development of emotional and behavioral problems and the (social) functioning of preadolescents into adulthood, their determinants, and underlying mechanisms.
STOREDB is a platform for the archiving and sharing of primary data and outputs of all kinds, including epidemiological and experimental data, from research on the effects of radiation. It also provides a directory of bioresources and databases containing information and materials that investigators are willing to share. STORE supports the creation of a radiation research commons.
Country
Sikt archives research data on people and society to make sure the data can be shared and is made available for reuse. We continuously enrich our data collections to provide a richer basis for research. Sikt’s main focus is quantitative data matrices on individuals, organisations, administrative, political, and geographical actors. The archive specialise in survey data, which undergoes extensive curation at the variable level and detailed metadata is produced and published in Norwegian and English.
The Gulf of Mexico Research Initiative Information and Data Cooperative (GRIIDC) is a team of researchers, data specialists and computer system developers who are supporting the development of a data management system to store scientific data generated by Gulf of Mexico researchers. The Master Research Agreement between BP and the Gulf of Mexico Alliance that established the Gulf of Mexico Research Initiative (GoMRI) included provisions that all data collected or generated through the agreement must be made available to the public. The Gulf of Mexico Research Initiative Information and Data Cooperative (GRIIDC) is the vehicle through which GoMRI is fulfilling this requirement. The mission of GRIIDC is to ensure a data and information legacy that promotes continual scientific discovery and public awareness of the Gulf of Mexico Ecosystem.
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).
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
Country
The mission of ChiCTR is to “unite clinicians, clinical epidemiologists, biostatisticians, epidemiologists and healthcare 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 evidence 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.
The ISRCTN registry is a primary clinical trial registry recognised by WHO and ICMJE that accepts all clinical research studies (whether proposed, ongoing or completed), providing content validation and curation and the unique identification number necessary for publication. All study records in the database are freely accessible and searchable. ISRCTN supports transparency in clinical research, helps reduce selective reporting of results and ensures an unbiased and complete evidence base. ISRCTN accepts all studies involving human subjects or populations with outcome measures assessing effects on human health and well-being, including studies in healthcare, social care, education, workplace safety and economic development.