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The Health Data Research Innovation Gateway (the ‘Gateway’) provides a common entry point to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by members of the UK Health Data Research Alliance, such as a description, size of the population, and the legal basis for access. The Gateway includes the ability to search for research projects, publications and health data tools, such as those related to COVID-19. New interactive features provide a community forum for researchers to collaborate and connect and the ability to add research projects. The Innovation Gateway does not hold or store any datasets or patient or health data but rather acts as a portal to allow discovery of datasets and to request access to them for health research. A dataset is a collection of related individual pieces of data but in the case of health data, identifiable information (e.g. name or NHS number) is removed and data is de-identified where possible. When you access the Gateway you will not be able to view or extract the data itself. Instead, you will be able to see information that describes what the different datasets are (e.g. where the dataset has come from, a description of the dataset, the time period and the geographical areas the dataset covers).
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.
>>>!!!<<< Noticed 26.08.2020: The NCI CBIIT instance of the CGAP no longer exist on this website. The Mitelman Database of Chromosome Aberrations and Gene Fusions in Cancer has a new home at the NCI-funded Institute for Systems Biology Cancer Genomics Cloud available at the following location: https://mitelmandatabase.isb-cgc.org >>>!!!<<<
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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 PRO-ACT platform houses the largest ALS clinical trials dataset ever created. It is a powerful tool for biomedical researchers, statisticians, clinicians, or anyone else interested in "Big Data." PRO-ACT merges data from existing public and private clinical trials, generating an invaluable resource for the design of future ALS clinical trials. The database will also contribute to the identification of unique observations, novel correlations, and patterns of ALS disease progression, as well as a variety of still unconsidered analyses. More than 600,000 people around them world are battling ALS. The disease strikes indiscriminately, and typically patients will die within 2-5 years following diagnosis. Currently, there are no effective treatments or a cure for ALS. Users of PRO-ACT are helping to accelerate the discovery, development, and delivery of ALS treatments, which will provide hope to patients and their families.
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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.
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.