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Found 21 result(s)
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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.
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.
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National Human Brain Bank for Development and Function was originally established in 2012 by the Institute of Basic Medical Sciences, Chinese Academy of Medical Sciences as a public interest institution dedicated to the preservation and research of human brain tissues based on the volunteer donor station of Peking Union Medical College. In 2019, it was officially recognised by the Ministry of Science and Technology as a national science and technology resource platform: National Human Brain Bank for Development and Function. Since its establishment, the Concordia Brain Bank has accepted and preserved more than two hundred and seventy whole brain tissue samples. While conducting its own research on the standardisation of brain banks, neuropathology and various histologies related to human brain ageing and dementia, it has also developed and published the Standardised Operational Protocol for Human Brain Tissue Banks in China for more than ten universities in China, and has provided valuable human brain tissue samples for a number of research groups in our own institutions and other units in China, which has strongly supported brain science and brain disease research in China. As a national resource platform, we will continue to aim to support and lead brain science research in China and make positive contributions to maintaining brain health and defeating brain diseases.
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.
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The Penn Integrated Neurodegenerative Disease Database (INDD) contains data from individuals with Alzheimer's disease, Parkinson's disease, frontotemporal dementia, and amyotrophic lateral sclerosis, who have been followed in research studies at the University of Pennsylvania. The database has been periodically described in publications (https://pubmed.ncbi.nlm.nih.gov/23978324/), with updates on the website. Researchers can request biosamples as well as clinical and biomarker data. Scientists work collaboratively to analyze the Integrative Neurodegenerative Disease Database (INDD) from the Center for Neurodegenerative Disease Research (CNDR) that tracks ~11,000 patients who attended one of four neurodegenerative disease centers at Penn.
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The New York Brain Bank (NYBB) at Columbia University was established to collect postmortem human brains to meet the needs of neuroscientists investigating specific psychiatric and neurological disorders.
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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.
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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.
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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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.
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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.
!!! >>> 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 National Trauma Data Bank® (NTDB) is the largest aggregation of trauma registry data ever assembled. The goal of the NTDB is to inform the medical community, the public, and decision makers about a wide variety of issues that characterize the current state of care for injured persons. Registry data that is collected from the NTDB is compiled annually and disseminated in the forms of hospital benchmark reports, data quality reports, and research data sets. Research data sets that can be used by researchers. To gain access to NTDB data, researchers must submit requests through our online application process
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.