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A registry actively documents and standardizes patient data on pre-defined questions. The term "register" emphasizes the data-holding aspect with the aim of describing epidemiological relationships and differences, supporting quality assurance and improvement, as well as clinical research. The evaluation of efficacy in the medical care routine, the monitoring of patient safety as well as economic evaluation and minimum quantity research are further tasks of registries. Patients and reporting institutions determine the quality of registries through completeness and high data validity. This must be taken into account when designing, financing and operating a registry. The analysis of potentially confounding or effect modifying variables is of significant importance for the evaluation of multi-center data from registers. Regular feedback to reporting institutions, patient information, public announcements and scientific publications as well as compliance with data protection regulations increase the transparency of the register. Otorhinolaryngology has few points of contact with registries. An exception is the integration into the cancer registry and the newborn hearing screening registry, which is currently under construction. The great variety of measurable outcome parameters in otorhinolaryngology, such as in otology, phoniatrics, rhinology, allergology, etc., forms the basis for various potential registers. Clinical questions, prevention measures, quality assurance, health care research and recommendations for health policy would be scientifically sound and evidence-based.
This article was published in the following journal.
Name: Laryngo- rhino- otologie
Outcomes for patients with multiple myeloma (MM) have improved with the advent of novel therapies, however, real-world evidence of outcomes in clinical practice is scarce. We conducted a multi-center ...
Defining the core data set is the main step for establishing a registry system. The aim of this study was to define the core data set for the registry of esophageal atresia in the northwest of Iran.
The trauma registry is a locally maintained database with information on all trauma patients, including patient demographics and injury data. One essential field is the injury severity score (ISS). Pa...
Linkage of cancer registry data with complementary data sources can be an informative way to expand what is known about patients and their treatment and improve delivery of care. The purpose of this s...
Electronic health record (EHR) systems contain large volumes of novel heterogeneous data that can be linked to trauma registry data to enable innovative research not possible with either data sourc...
The registry is an international, multicenter, observational registry of newly diagnosed patients with SCLC. Data will be entered into an electronic CRF (eCRF) via Internet access. Treatm...
This is a multicenter, retrospective and prospective, long-term registry of patients with benign or malignant hematologic diseases, whether or not these patients were or were not treated w...
The purpose of this study is to create an electronic registry to house phenotypic information from patients with achondroplasia. The initial focus of this registry will be to include U.S. ...
The ARCHYTAS Registry is a long-term, global, multicenter, non-randomized, prospective, registry designed to collect "on-label" data in real world clinical settings on patients undergoing ...
This study is an observational (ie, non-interventional), longitudinal, multicenter, global registry for patients with pyruvate kinase (PK) deficiency, a rare non-spherocytic hemolytic anem...
Controlled studies which are planned and carried out by several cooperating institutions to assess certain variables and outcomes in specific patient populations, for example, a multicenter study of congenital anomalies in children.
Research carried out by nurses that uses interviews, data collection, observation, surveys, etc., to evaluate nursing, health, clinical, and nursing education programs and curricula, and which also demonstrates the value of such evaluation.
Information application based on a variety of coding methods to minimize the amount of data to be stored, retrieved, or transmitted. Data compression can be applied to various forms of data, such as images and signals. It is used to reduce costs and increase efficiency in the maintenance of large volumes of data.
Various units or machines that operate in combination or in conjunction with a computer but are not physically part of it. Peripheral devices typically display computer data, store data from the computer and return the data to the computer on demand, prepare data for human use, or acquire data from a source and convert it to a form usable by a computer. (Computer Dictionary, 4th ed.)
The science and art of collecting, summarizing, and analyzing data that are subject to random variation. The term is also applied to the data themselves and to the summarization of the data.
Clinical Research Organization
Contract Research Organization (CRO) provide research services outsourced on a contract basis to the pharmaceutical, biotechnology, healthcare and medical device industries: biopharmaceutical development biologic assay development commercial...
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