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The Pacific Islands Families (PIF) Study is an ongoing longitudinal birth cohort study that has been tracking the health and development of 1,398 Pacific children and their parents since the children were born at Middlemore Hospital in South Auckland in the year 2000. It is the only prospective study specifically of Pacific peoples in the world.
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The Centre for Applied Genomics hosts a variety of databases related to ongoing supported projects. Curation of these databases is performed in-house by TCAG Bioinformatics staff. The Autism Chromosome Rearrangement Database, The Cystic Fibrosis Mutation Database, TThe Lafora Progressive Myoclonus Epilepsy Mutation and Polymorphism Database are included. Large Scale Genomics Research resources include, the Database of Genomic Variants, The Chromosome 7 Annotation Project, The Human Genome Segmental Duplication Database, and the Non-Human Segmental Duplication Database
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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
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Through its Blood4Research Program based in Vancouver, the Centre for Innovation collects blood from committed donors who have been deferred from donating blood for patient use. The collected blood is processed and provided to investigators to facilitate research that promotes advances in the fields of transfusion, cellular therapies, and transplantation medicine. Through its Cord Blood for Research Program, Canadian Blood Services’ Cord Blood Bank provides investigators with cord blood products to facilitate research that promotes advances in the fields of transfusion, cellular therapies, and transplantation medicine.​ The Cord Blood for Research Program distributes cord blood products that do not meet the criteria for storage in the cord blood bank but still contain enough cells for meaningful research and for which mothers’ research consent has been obtained.
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PHO's data inventory lists all PHO data sets and identifies whether a data set is currently open, in the process of being opened or exempt from being released.
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The Canadian Longitudinal Study on Aging (CLSA) is a large, national, long-term study of more than 50,000 individuals who were between the ages of 45 and 85 when recruited. These participants will be followed until 2033 or death. The aim of the CLSA is to find ways to help us live long and live well, and understand why some people age in healthy fashion while others do not.
The Netherlands Cancer Registry is the national registration since 1989, providing statistics on cancer in the Netherlands. The registry is maintained by the Netherlands Comprehensive Cancer Organisation (IKNL). Data on incidence, prevalence, survival, mortality can be viewed in NCR data & figures on the IKNL website.
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The CHILDdb platform provides access to data produced by the CHILD project, a longitudinal birth cohort study of children from pregnancy to 8 years of age, across four Canadian provinces. This study analyzes the participants' home environment including physical, chemical, viral, bacterial, nutritional and psychosocial exposures. This data is expected to further knowledge of the genetic and environmental determinants of atopic diseases including asthma, allergy, allergic rhinitis, and eczema. Researchers can create an account to view meta and aggregate data; access demographic data summaries based on selected variables; and submit a scientific Concept Proposal for approval to access individual-level study data.
It is a platform for supporting Open Data initiative of Government of Odisha, intends to publish datasets collected by them for public use. It also supports widely used file formats that are suitable for machine processing, thus gives avenues for many more innovative uses of Government Data in different perspective. This portal has been created under Software as A Service (SaaS) model of Open Government Data (OGD) Platform India of NIC. The data available in the portal are owned by various Departments/Organization of Government of Odisha. It follows principles on which data sharing and accessibility need to be based include: Openness, Flexibility, Transparency, Quality, Security and Machine-readable.
The Dallas Heart Study (DHS) is a multi-ethnic, population-based probability sample of Dallas County designed to define the social and the biological variables contributingto ethnic differences in cardiovascular health at the community level and to support hypothesis-driven research aimed at determining the underlying mechanisms contributing to differences in cardiovascular risk. The initial data collection from the population was performed in three sequential stages over a two year period(2000-2002) and included the collection of detailed socioeconomic, biomarker and imaging data from each participant. The underlying assumption of the study is that successful identification of new risk factors for cardiovascular disease will require the availability of an exquisitely phenotyped, multiethnic population in close proximity to the Center.
Chapman University Digital Commons is an open access digital repository and publication platform designed to collect, store, index, and provide access to the scholarly and creative output of Chapman University faculty, students, staff, and affiliates. In it are faculty research papers and books, data sets, outstanding student work, audiovisual materials, images, special collections, and more, all created by members of or owned by Chapman University. The datasets are listed in a separate collection.
The Social Science Data Archive is still active and maintained as part of the UCLA Library Data Science Center. SSDA Dataverse is one of the archiving opportunities of SSDA, the others are: Data can be archived by SSDA itself or by ICPSR or by UCLA Library or by California Digital Library. The Social Science Data Archives serves the UCLA campus as an archive of faculty and graduate student survey research. We provide long term storage of data files and documentation. We ensure that the data are useable in the future by migrating files to new operating systems. We follow government standards and archival best practices. The mission of the Social Science Data Archive has been and continues to be to provide a foundation for social science research with faculty support throughout an entire research project involving original data collection or the reuse of publicly available studies. Data Archive staff and researchers work as partners throughout all stages of the research process, beginning when a hypothesis or area of study is being developed, during grant and funding activities, while data collection and/or analysis is ongoing, and finally in long term preservation of research results. Our role is to provide a collaborative environment where the focus is on understanding the nature and scope of research approach and management of research output throughout the entire life cycle of the project. Instructional support, especially support that links research with instruction is also a mainstay of operations.
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The NCIS is a national database of information on every death reported to a coroner in Australia and New Zealand. It contains demographic information on the deceased, contextual information on the nature of the fatality and medico-legal documents including the coroner's finding, autopsy and toxicology reports and the police notification of death report.
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Rīga Stradiņš University (RSU) Dataverse is created for RSU researchers to deposit their data there after the end of research projects or other research activities, especially in cases when there are no trusted field specific repositories.
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The German National Cohort (NAKO) has been inviting men and women aged between 20 and 69 to 18 study centers throughout Germany since 2014. The participants are medically examined and questioned about their living conditions. The GNC’s aim is to investigate the causes of chronic diseases, such as cancer, diabetes, cardiovascular diseases, rheumatism, infectious diseases, and dementia in order to improve prevention, early diagnoses and treatment of these very widely spread diseases.
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Base of Knowledge Wrocław University of Environmental and Life Sciences / Research Data Repository is an institutional open research data repository, offering the possibility to deposit datasets (as well as publications) created by researchers, PhD candidates and students of Wrocław University of Environmental and Life Sciences. It is intended for scientific data from the disciplines related to the University’s profile. It is a platform where research data can be safely collected, stored and openly shared with others, obtaining a permanent Digital Object Identifier (DOI) for each dataset and choosing a data usage license. Research Data Repository applies the FAIR Principles (data is findable, accessible, interoperable and reusable).
SimTK is a free project-hosting platform for the biomedical computation community that enables researchers to easily share their software, data, and models and provides the infrastructure so they can support and grow a community around their projects. It has over 126.656 members, hosts 1.648 projects from researchers around the world, and has had more than 2.095.783 files downloaded from it. Individuals have created SimTK projects to meet publisher and funding agencies’ software and data sharing requirements, run scientific challenges, create a collection of their community’s resources, and much more.
!!! >>> merged with https://www.re3data.org/repository/r3d100012653 <<< !!! RDoCdb is an informatics platform for the sharing of human subjects data generated by investigators as part of the NIMH's Research Domain Criteria initiative, and to support this initiative's aims. It also accepts and shares appropriate data related to mental health from other sources.
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The Data Access Support Hub (DASH) is a one-stop data access service portal for researchers requiring multi-regional data in Canada. DASH services are provided by a multi-centre coordination team from various provincial/territorial data centres and pan-Canadian organizations, including the Canadian Institute for Health Information (CIHI) and Statistics Canada.
<<<!!!<<< This information is for reference purposes only. It was current when produced and may now be outdated. Archive material is no longer maintained, and some links may not work. Persons with disabilities having difficulty accessing this information should contact us at: https://info.ahrq.gov. Let us know the nature of the problem, the Web address of what you want, and your contact information. Please go to www.ahrq.gov for current information. >>>!!!>>> HIV and AIDS Costs and Use is the first major research effort to collect information on a nationally representative sample of people in care for HIV infection. Also called the HIV Cost and Services Utilization Study (HCSUS), the core study is meant to help policymakers in the U.S. make informed decisions on the subject. The study describes the type of therapies available and costs of health care services for people with HIV/AIDS, as well as quality of care, social support, and non-medical services HIV/AIDS patients receive. Supplemental studies examine HIV care delivery in rural areas, prevalence of mental and substance abuse disorders, and other health issues of HIV/AIDS patients.
LOVD portal provides LOVD software and access to a list of worldwide LOVD applications through Locus Specific Database list and List of Public LOVD installations. The LOVD installations that have indicated to be included in the global LOVD listing are included in the overall LOVD querying service, which is based on an API.