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Patient Registry
Disease or patient registries are collections of secondary data related to patients with a specific diagnosis, condition, or procedure, and they play an important role in post marketing surveillance of pharmaceuticals. Registries are different from indexes in that they contain more extensive data. In its simplest form, a disease registry could consist of a collection of paper cards kept inside "a shoe box" by an individual physician. Most frequently registries vary in sophistication from simple spreadsheets that only can be accessed by a small group of physicians to very complex databases that are accessed online across multiple institutions. They can provide health providers (or even patients) with reminders to check certain tests in order to reach certain quality goals. Versus electronic medical records Registries are less complex and simpler to set up than electronic medical records that according to a recent survey are only used by 9% of small offices where almost half of the ...
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Post Marketing Surveillance
Postmarketing surveillance (PMS), also known as post market surveillance, is the practice of monitoring the safety of a pharmaceutical drug or medical device after it has been released on the market and is an important part of the science of pharmacovigilance. Since drugs and medical devices are approved on the basis of clinical trials, which involve relatively small numbers of people who have been selected for this purpose – meaning that they normally do not have other medical conditions which may exist in the general population – postmarketing surveillance can further refine, or confirm or deny, the safety of a drug or device after it is used in the general population by large numbers of people who have a wide variety of medical conditions. Postmarketing surveillance uses a number of approaches to monitor drug and device safety, including spontaneous reporting databases, prescription event monitoring, electronic health records, patient registries, and record linkage between he ...
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National Committee For Quality Assurance
The National Committee for Quality Assurance (NCQA) is an independent 501(c)(3) nonprofit organization in the United States that works to improve health care quality through the administration of evidence-based standards, measures, programs, and accreditation. The National Committee for Quality Assurance operates on a formula of measure, analyze, and improve and it aims to build consensus across the industry by working with policymakers, employers, doctors, and patients, as well as health plans. History The National Committee for Quality Assurance was established in 1990 with support from the Robert Wood Johnson Foundation. Programs The National Committee for Quality Assurance manages voluntary accreditation programs for individual physicians, health plans, and medical groups. It offers dedicated programs targeting vendor certification, software certification, and compliance auditing. Health plans seek accreditation and measure performance through the administration and submissi ...
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Health Informatics
Health informatics is the field of science and engineering that aims at developing methods and technologies for the acquisition, processing, and study of patient data, which can come from different sources and modalities, such as electronic health records, diagnostic test results, medical scans. The health domain provides an extremely wide variety of problems that can be tackled using computational techniques. Health informatics is a spectrum of multidisciplinary fields that includes study of the design, development and application of computational innovations to improve health care. The disciplines involved combines medicine fields with computing fields, in particular computer engineering, software engineering, information engineering, bioinformatics, bio-inspired computing, theoretical computer science, information systems, data science, information technology, autonomic computing, and behavior informatics. In academic institutions, medical informatics research focus on a ...
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Health Care Quality
Health care quality is a level of value provided by any health care resource, as determined by some measurement. As with quality in other fields, it is an assessment of whether something is good enough and whether it is suitable for its purpose. The goal of health care is to provide medical resources of high quality to all who need them; that is, to ensure good quality of life, cure illnesses when possible, to extend life expectancy, and so on. Researchers use a variety of quality measures to attempt to determine health care quality, including counts of a therapy's reduction or lessening of diseases identified by medical diagnosis, a decrease in the number of risk factors which people have following preventive care, or a survey of health indicators in a population who are accessing certain kinds of care. Definition Health care quality is the degree to which health care services for individuals and populations increase the likelihood of desired health outcomes. Quality of care p ...
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Clinical Trials Registry
Preregistration is the practice of registering the hypotheses, methods, and/or analyses of a scientific study before it is conducted. This can include analyzing primary data or secondary data. Clinical trial registration is similar, although it may not require the registration of a study's analysis protocol. Finally, registered reports include the peer review and in principle acceptance of a study protocol prior to data collection. Preregistration assists in the identification and/or reduction of a variety of potentially problematic research practices, including p-hacking, publication bias, data dredging, inappropriate forms of post hoc analysis, and (relatedly) HARKing. It has recently gained prominence in the open science community as a potential solution to some of the issues that are thought to underlie the replication crisis. However, critics have argued that it may not be necessary when other open science practices are implemented such as Registered Reports. Types Standa ...
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Neuromuscular Disease
A neuromuscular disease is any disease affecting the peripheral nervous system (PNS), the neuromuscular junction, or skeletal muscle, all of which are components of the motor unit. Damage to any of these structures can cause muscle atrophy and weakness. Issues with sensation can also occur. Neuromuscular diseases can be acquired or genetic. Mutations of more than 500 genes have shown to be causes of neuromuscular diseases. Other causes include nerve or muscle degeneration, autoimmunity, toxins, medications, malnutrition, metabolic derangements, hormone imbalances, infection, nerve compression/entrapment, comprised blood supply, and trauma. Signs and symptoms Symptoms of neuromuscular disease may include numbness, paresthesia, muscle weakness, muscle atrophy, myalgia (muscle pain), and fasciculations (muscle twitches). Causes Neuromuscular disease can be caused by autoimmune disorders, genetic/hereditary disorders and some forms of the collagen disorder Ehlers–Dan ...
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TREAT-NMD
TREAT-NMD (treat NeuroMuscular Disease) is a global academic network that focuses on advancing research in neuromuscular disorders. It was established in 2007 with its coordination centre at the Newcastle University. As of 2018, the network comprises over a hundred research centres and patient organisations from 54 countries as well as independent academics and patient representatives. The network's aim is to provide infrastructure to accelerating research through supporting collaboration between its members. Its main goals include improving trial-readiness worldwide, advancing patient diagnosis and care and accelerating pre-clinical research. Through patient registries, TREAT-NMD provides genotype–phenotype correlation between genetic mutation In biology, a mutation is an alteration in the nucleic acid sequence of the genome of an organism, virus, or extrachromosomal DNA. Viral genomes contain either DNA or RNA. Mutations result from errors during DNA or viral ...
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Gestational Diabetes
Gestational diabetes is a condition in which a woman without diabetes develops high blood sugar levels during pregnancy. Gestational diabetes generally results in few symptoms; however, it increases the risk of pre-eclampsia, depression, and of needing a Caesarean section. Babies born to mothers with poorly treated gestational diabetes are at increased risk of macrosomia, of having hypoglycemia after birth, and of jaundice. If untreated, diabetes can also result in stillbirth. Long term, children are at higher risk of being overweight and of developing type 2 diabetes. Gestational diabetes can occur during pregnancy because of insulin resistance or reduced production of insulin. Risk factors include being overweight, previously having gestational diabetes, a family history of type 2 diabetes, and having polycystic ovarian syndrome. Diagnosis is by blood tests. For those at normal risk, screening is recommended between 24 and 28 weeks' gestation. For those at high risk, testin ...
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Polycystic Ovaries
Polycystic ovary syndrome, or PCOS, is the most common endocrine disorder in women of reproductive age. The syndrome is named after the characteristic cysts which may form on the ovaries, though it is important to note that this is a sign and not the underlying cause of the disorder. Women with PCOS may experience irregular menstrual periods, heavy periods, excess hair, acne, pelvic pain, difficulty getting pregnant, and patches of thick, darker, velvety skin. The primary characteristics of this syndrome include: hyperandrogenism, anovulation, insulin resistance, and neuroendocrine disruption. A review of the international evidence found that the prevalence of PCOS could be as high as 26% among some populations, though ranges between 4% and 18% are reported for general populations. Despite its high prevalence, the exact cause of PCOS remains uncertain and there is no known cure. Definition Two definitions are commonly used: * NIH : In 1990 a consensus workshop sponsore ...
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Healthcare Effectiveness Data And Information Set
The Healthcare Effectiveness Data and Information Set (HEDIS) is a widely used set of performance measures in the managed care industry, developed and maintained by the National Committee for Quality Assurance (NCQA). HEDIS was designed to allow consumers to compare health plan performance to other plans and to national or regional benchmarks. Although not originally intended for trending, HEDIS results are increasingly used to track year-to-year performance. HEDIS is one component of NCQA's accreditation process, although some plans submit HEDIS data without seeking accreditation. An incentive for many health plans to collect HEDIS data is a Centers for Medicare and Medicaid Services (CMS) requirement that health maintenance organizations (HMOs) submit Medicare HEDIS data in order to provide HMO services for Medicare enrollees under a program called Medicare Advantage. HEDIS was originally titled the " HMO Employer Data and Information Set" as of version 1.0 of 1991.Mainous AG 3 ...
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Electronic Medical Record
An electronic health record (EHR) is the systematized collection of patient and population electronically stored health information in a digital format. These records can be shared across different health care settings. Records are shared through network-connected, enterprise-wide information systems or other information networks and exchanges. EHRs may include a range of data, including demographics, medical history, medication and allergies, immunization status, laboratory test results, radiology images, vital signs, personal statistics like age and weight, and billing information. For several decades, electronic health records (EHRs) have been touted as key to increasing of quality care. Electronic health records are used for other reasons than charting for patients; today, providers are using data from patient records to improve quality outcomes through their care management programs. EHR combines all patients demographics into a large pool, and uses this information to assi ...
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Garbage In, Garbage Out
In computer science, garbage in, garbage out (GIGO) is the concept that flawed, or nonsense (garbage) input data produces nonsense output. Rubbish in, rubbish out (RIRO) is an alternate wording. The principle applies to all logical argumentation: soundness implies validity, but validity does not imply soundness. History The expression was popular in the early days of computing. The first known use is in a 1957 syndicated newspaper article about US Army mathematicians and their work with early computers, in which an Army Specialist named William D. Mellin explained that computers cannot think for themselves, and that "sloppily programmed" inputs inevitably lead to incorrect outputs. The underlying principle was noted by the inventor of the first programmable computing device design: More recently, the Marine Accident Investigation Branch comes to a similar conclusion: The term may have been derived from last-in, first-out (LIFO) or first-in, first-out (FIFO). Uses This p ...
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