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Found 21 result(s)
The data in the U of M’s Clinical Data Repository comes from the electronic health records (EHRs) of more than 2 million patients seen at 8 hospitals and more than 40 clinics. For each patient, data is available regarding the patient's demographics (age, gender, language, etc.), medical history, problem list, allergies, immunizations, outpatient vitals, diagnoses, procedures, medications, lab tests, visit locations, providers, provider specialties, and more.
The N3C Data Enclave is a secure portal containing a very large and extensive set of harmonized COVID-19 clinical electronic health record (EHR) data. The data can be accessed through a secure cloud Enclave hosted by NCATS and cannot be downloaded due to regulatory control. Broad access is available to investigators at institutions that sign a Data Use Agreements and via Data Use Requests by investigators. The N3C is a unique open, reproducible, transparent, collaborative team science initiative to leverage sensitive clinical data to expedite COVID-19 discoveries and improve health outcomes.
The National Health Research and Studies Portal (NHRSP) is an initiative to build a national digital research data infrastructure, that provides data for health-related research, to meet tomorrow's health challenges. NHRSP aims to make health research more sustainable, efficient and responsive to health challenges, through research data sharing and re-cycling, in accordance with the ethical standards of scientific research.
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The German Portal for Medical Research Data (FDPG) is the central point of administration for scientists conducting research projects with routine medical data from German universities. The Medical Informatics Initiative (MII), which is funded by the Federal Ministry of Education and Research (BMBF), collects patient data and biosamples taken during routine care for medical research and processes them at data integration centres based in university hospitals. The data are then made available in accordance with data protection regulations.
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Human biomaterial banks (short: biobanks) are collections of human body substances (i.e. blood, DNA, urine or tissue) connected with disease specific information. This allow for research of relations between deseases and underlying (molecular) modifications and paves the way for developing target-oriented therapies ("personalized medicine"). The biobank material arises from samples taken for therapeutical or diagnostic reasons or is extracted in the context of clinical trials. An approval for usage by the patient is always needed prior to any research activities.
HI HOPES aims is to provide free home based support and information without bias to every family with an infant or toddler with hearing loss. Through an early intervention framework of care, support, information and partnership in a culturally sensitive, community based manner to allow we aim to empower the family in their home environment and help the baby with a hearing loss to reach her/his full potential.
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The SHIP study´s main aims include the investigation of health in all its aspects and complexity involving the collection and assessment of data relevant to the prevalence and incidence of common, population-relevant diseases and their risk factors.
The Growing Up Today Study is a collaborative study between clinicians, researchers, and thousands of participants across the US and beyond. The aim of this study is to gain a deeper understanding of the factors that affect health throughout life. Together we are working to building one of the most powerful resources for fighting cancer, obesity, heart disease, depression, and so much more.
The Twenty-07 Study was set up in 1986 in order to investigate the reasons for differences in health by socio-economic circumstances, gender, area of residence, age, ethnic group, and family type. 4510 people are being followed for 20 years. The initial wave of data collection took place in 1987/8, when respondents were aged 15, 35 and 55. The final wave of data collection took place in 2007/08 when respondents were aged 35, 55 and 75. In this way the Twenty-07 Study provides us with unique opportunities to investigate both the changes in people's lives over 20 years and how they affect their health, and the differences in people's experiences at the same ages 20 years apart, and how these have different effects on their health.
In 2003, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH established Data, Biosample, and Genetic Repositories to increase the impact of current and previously funded NIDDK studies by making their data and biospecimens available to the broader scientific community. These Repositories enable scientists not involved in the original study to test new hypotheses without any new data or biospecimen collection, and they provide the opportunity to pool data across several studies to increase the power of statistical analyses. In addition, most NIDDK-funded studies are collecting genetic biospecimens and carrying out high-throughput genotyping making it possible for other scientists to use Repository resources to match genotypes to phenotypes and to perform informative genetic analyses.
Born in Bradford is one of the biggest and most important medical research studies undertaken in the UK. The project started in 2007 and is looking to answer questions about our health by tracking the lives of 13,500 babies and their families and will provide information for studies across the UK and around the world. The aim of Born in Bradford is to find out more about the causes of childhood illness by studying children from all cultures and backgrounds as their lives unfold.
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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.
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sciencedata.dk is a research data store provided by DTU, the Danish Technical University, specifically aimed at researchers and scientists at Danish academic institutions. The service is intended for working with and sharing active research data as well as for safekeeping of large datasets. The data can be accessed and manipulated via a web interface, synchronization clients, file transfer clients or the command line. The service is built on and with open-source software from the ground up: FreeBSD, ZFS, Apache, PHP, ownCloud/Nextcloud. DTU is actively engaged in community efforts on developing research-specific functionality for data stores. Our servers are attached directly to the 10-Gigabit backbone of "Forskningsnettet" (the National Research and Education Network of Denmark) - implying that up and download speed from Danish academic institutions is in principle comparable to those of an external USB hard drive. Data store for research data allowing private sharing and sharing via links / persistent URLs.
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KiGGS is a long-term study conducted by the Robert Koch Institute (RKI) on the health of children and adolescents in Germany. The study repeatedly supplies data, representative of the country as a whole, on the health of under 18-year-olds. In addition, the children and adolescents of the first KiGGS study are repeatedly invited, and they continue to be monitored right into their adulthood.
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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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The team have established the CardiacAI Data Repository that brings large amounts of Australian healthcare data together in a secure environment with strict conditions for use of these data with an appropriate level of oversight of research activities. The CardiacAI Data Repository collects de-identified EMR data about cardiovascular patients who are admitted to a group of urban and regional hospitals in NSW and links this with state-wide hospital and emergency deparment visit and mortality data and mobile-health remote monitoring data.
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The Population Health Research Data Repository housed at MCHP is a comprehensive collection of administrative, registry, survey, and other data primarily relating to residents of Manitoba. It was developed to describe and explain patterns of health care and profiles of health and illness, facilitating inter-sectoral research in areas such as health care, education, and social services.
!!! >>> 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.
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.