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Found 7 result(s)

PROFILES Registry

Subject(s)
Content type(s)
Country
Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship (PROFILES)’ is a registry for the study of the physical and psychosocial impact of cancer and its treatment from a dynamic, growing population-based cohort of both short and long-term cancer survivors. Researchers from the Netherlands Comprehensive Cancer Centre and Tilburg University in Tilburg, The Netherlands, work together with medical specialists from national hospitals in order to setup different PROFILES studies, collect the necessary data, and present the results in scientific journals and (inter)national conferences.

The Cancer Imaging Archive

TCIA

Subject(s)
Content type(s)
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TCIA is a service which de-identifies and hosts a large archive of medical images of cancer accessible for public download. The data are organized as “collections”; typically patients’ imaging related by a common disease (e.g. lung cancer), image modality or type (MRI, CT, digital histopathology, etc) or research focus. Supporting data related to the images such as patient outcomes, treatment details, genomics and expert analyses are also provided when available.

Agency for Healthcare Research and Quality, Data & Surveys

AHRQ data & surveys

Subject(s)
Content type(s)
Country
A collection of data at Agency for Healthcare Research and Quality (AHRQ) supporting research that helps people make more informed decisions and improves the quality of health care services. The portal contains U.S.Health Information Knowledgebase (USHIK) and Systematic Review Data Repository (SRDR) and other sources concerning cost, quality, accesibility and evaluation of healthcare and medical insurance.

International Clinical Trials Registry Platform

ICTRP

Subject(s)
Content type(s)
Country
The global scientific community, international partners, the private sector, civil society, and other relevant stakeholders establish a voluntary platform to link clinical trials registers in order to ensure a single point of access and the unambiguous identification of trials with a view to enhancing access to information by patients, families, patient groups and others.

ClinVar

Subject(s)
Content type(s)
Country
ClinVar is a freely accessible, public archive of reports of the relationships among human variations and phenotypes, with supporting evidence. ClinVar thus facilitates access to and communication about the relationships asserted between human variation and observed health status, and the history of that interpretation. ClinVar processes submissions reporting variants found in patient samples, assertions made regarding their clinical significance, information about the submitter, and other supporting data. The alleles described in submissions are mapped to reference sequences, and reported according to the HGVS standard. ClinVar then presents the data for interactive users as well as those wishing to use ClinVar in daily workflows and other local applications. ClinVar works in collaboration with interested organizations to meet the needs of the medical genetics community as efficiently and effectively as possible

Zentrale Biomaterialbank der Charité

Central Biomaterial Bank Charité

Subject(s)
Content type(s)
Country
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.

Breast Cancer Surveillance Consortium

BCSC

Subject(s)
Content type(s)
Country
The Breast Cancer Surveillance Consortium (BCSC) is a research resource for studies designed to assess the delivery and quality of breast cancer screening and related patient outcomes in the United States. The BCSC is a collaborative network of seven mammography registries with linkages to tumor and/or pathology registries. The network is supported by a central Statistical Coordinating Center.