Disease registry based study

Registry Design - Registries for Evaluating Patient ...

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Designing a prospective, nested study within an established disease registry has many benefits: the study leverages existing infrastructure, patient and site staff are familiar with the registry, and site relationships are already in place. Substudies need to be well planned and address a compelling clinical issue.

Registry Design - Registries for Evaluating Patient ...

List of Registries | National Institutes of Health (NIH)

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3/18/2019 · A registry is a collection of information about individuals, usually focused around a specific diagnosis or condition. Many registries collect information about people who have a specific disease or condition, while others seek participants of varying health status who may be willing to participate in research about a particular disease.

List of Registries | National Institutes of Health (NIH)

Registry Studies: Why and How - CDG Whitepapers

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7/19/2011 · How to do a registry study Implementing a registry study is not much different than implementing a clinical study. All the basic elements of design, planning, and project management are present. There is a lack of consensus standards for registry studies so …

Registry Studies: Why and How - CDG Whitepapers

Disease registry - Wikipedia

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The quality of a disease registry is based on the quality of data fed into it and all the processes involved in updating it and keeping its integrity. In every registry there is always a risk of "garbage in, garbage out". Issues that can affect a registry and its acceptance by a physician group:

Disease registry - Wikipedia

Societal costs due to meningococcal disease: a national ...

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5/30/2018 · The objective of this study was to estimate the average 5-year societal cost of events attributable to meningococcal disease in Denmark. Methods: The study was based on the nationwide Danish registries. Incident patients diagnosed with meningococcal disease were identified and each matched with two controls, using direct matching on age, gender ...

Societal costs due to meningococcal disease: a national ...

Agency for Toxic Substances and Disease Registry

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The Agency for Toxic Substances and Disease Registry (ATSDR), based in Atlanta, Georgia, is a federal public health agency of the U.S. Department of Health and Human Services. ATSDR serves the public by using the best science, taking responsive public health actions, and providing trusted health information to prevent harmful exposures and diseases related to toxic substances.

Agency for Toxic Substances and Disease Registry

Implementation of a population-based epidemiological rare ...

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Before starting with the implementation of the ALS-registry, a pilot study among 10 patients was performed in order to test the instruments and the organization of the ALS registry Swabia. Based on the helpful experiences made in the pilot study, the organization and …

Implementation of a population-based epidemiological rare ...

Foodborne Bacterial Infection and Hospitalization: A ...

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2/15/2006 · Registry-based study. To compare the risk of adverse effects for patients with that for people without known bacterial gastrointestinal infection, we used data from the Civil Registration System to create a reference group of ∼10 control subjects for each patient, matched by age, sex, and county of residence, who were alive on the date when a ...

Foodborne Bacterial Infection and Hospitalization: A ...

Computerized Disease Registries | AHRQ National Resource ...

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Unravelling the myotonic dystrophy type 1 clinical spectrum: A systematic registry-based study with implications for disease classification Author links open overlay panel M. De Antonio a b C. Dogan a D. Hamroun c M. Mati a S. Zerrouki a B. Eymard d S. Katsahian b G. Bassez a French Myotonic Dystrophy Clinical Network 1

Computerized Disease Registries | AHRQ National Resource ...

Unravelling the myotonic dystrophy type 1 clinical ...

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4/9/2018 · In this large registry-based cohort study, it was found that within a cohort of female breast cancer patients receiving radiotherapy or chemotherapy, heart-specific mortality was an important competing risk, which was observed to steadily increase by age.

Unravelling the myotonic dystrophy type 1 clinical ...

Long-term heart-specific mortality among 347 476 breast ...

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Allergy and autoimmune disease: a registry‐based study. B. Lindelöf. ... our aim was to perform a large epidemiological study with a defined allergic disease cohort. Methods During the years 1990–2002, 68 770 subjects were tested for total serum IgE (Total‐IgE) and 72 228 were tested with Phadiatop for diagnosing allergic disease at ...

Long-term heart-specific mortality among 347 476 breast ...

Allergy and autoimmune disease: a registry‐based study ...

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An international registry-based study. Thromb Haemost. ... Less than 50 patients are reported with platelet type von Willebrand disease (PT-VWD) worldwide. Several reports have discussed the diagnostic challenge of this disease versus the closely similar disorder type 2B VWD. However, no systematic study has evaluated this dilemma globally.

Allergy and autoimmune disease: a registry‐based study ...

Frequency of platelet type versus type 2B von Willebrand ...

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1/7/2019 · Gemini Therapeutics Announces the Initiation of CLARITY, a Disease Registry and Natural History Study of Subjects with Dry AMD and High-Risk Genotypes. Gemini initiates the largest and most complete longitudinal prospective clinical study to date of subjects with dry Age-Related Macular Degeneration (AMD) who are carriers of high-risk genotypes

Frequency of platelet type versus type 2B von Willebrand ...

Gemini Therapeutics Announces the Initiation of CLARITY, a ...

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2/17/2013 · Prospectively data of ALS patients were collected, of which about 70% agreed to participate in the population-based case–control study. All participants in the case–control study provided also a blood sample. The prospective part of the study is ongoing. The ALS registry Swabia has been implemented successfully.

Gemini Therapeutics Announces the Initiation of CLARITY, a ...

Implementation of a population-based epidemiological rare ...

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We conducted a nationwide registry-based cohort study of all Danish citizens diagnosed with alcoholic cirrhosis between January 1, 1977, and March 1, 2010. Data Sources The National Patient Registry contains data from all inpatient hospitalizations since 1977, and also data from outpatient and emergency room visits since 1995.24 Data

Implementation of a population-based epidemiological rare ...

Alcoholic Cirrhosis Increases Risk for Autoimmune Diseases ...

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11/1/2017 · The design of this study has inherent limitations that necessitate consideration. First, it is an observational study based on nationwide hospital-based healthcare registers that relies on ICD codes for inpatient and outpatient diagnoses for disease classification.

Alcoholic Cirrhosis Increases Risk for Autoimmune Diseases ...

Epidemiology of valvular heart disease in a Swedish ...

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1/31/2018 · Objective To examine the risks of myocardial infarction, stroke (ischaemic and haemorrhagic), peripheral artery disease, venous thromboembolism, atrial fibrillation or atrial flutter, and heart failure in patients with migraine and in a general population comparison cohort. Design Nationwide, population based cohort study. Setting All Danish hospitals and hospital outpatient clinics from 1995 ...

Epidemiology of valvular heart disease in a Swedish ...

Migraine and risk of cardiovascular diseases: Danish ...

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7/10/2018 · Prevalence of PD aged ≥45 years by age group and sex: a Females.b Males. HAAS Honolulu-Asia Aging Study, REP Rochester Epidemiology Project, CPDR-PP California Parkinson’s disease Registry ...

Migraine and risk of cardiovascular diseases: Danish ...

Prevalence of Parkinson’s disease across North America ...

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1/1/2019 · Design Registry-based study. Setting Primary care, Flanders, Belgium. Participants Data were obtained from Intego, a morbidity registration network in which 111 general practitioners of 48 practices collaborate. In the study period between 2000 and 2015, data from 165 796 unique patients aged 45 years and older were available.

Prevalence of Parkinson’s disease across North America ...

Burden of heart failure in Flemish general practices: a ...

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Background/Aims: In 1996, Nebraska became the first state in the United States to establish a Parkinson’s disease (PD) Registry. The objectives of this study were to determine the most common comorbid conditions among PD patients receiving inpatient and outpatient services in Nebraska between 2004 and 2012, and to examine whether PD patients had increased risks of these conditions.

Burden of heart failure in Flemish general practices: a ...

Comorbid Conditions in Parkinson’s Disease: A Population ...

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Background: Hirschsprung's disease is a congenital gut motility disorder, characterised by the absence of the enteric ganglion cells along the distal gut. The aim of this study was to describe the epidemiology of Hirschsprung's disease, including additional congenital anomalies, total prevalence, trends, and association with maternal age.

Comorbid Conditions in Parkinson’s Disease: A Population ...

Hirschsprung's disease prevalence in Europe: A register ...

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7/22/2013 · XLPAD is an observational study designed to evaluate the effectiveness and use of stent and non-stent based therapies among PAD patients. The study will create a registry that will include entry of procedural and clinical follow-up information into an online data collection software, REDCAP.Data available since Jan 1 2005 will be included in the registry, until 14,000 patients have been included.

Hirschsprung's disease prevalence in Europe: A register ...

Multi-Center Registry for Peripheral Arterial Disease ...

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The aims of our study were to establish robust estimates of stroke and non-stroke death incidence in people with ESKD, and to identify risk factors associated with dying after a stroke. MethOd study design and setting We performed a population-based cohort study of all adults and children starting RRT for treatment of ESKD in

Multi-Center Registry for Peripheral Arterial Disease ...

Open access Research Absolute risk and risk factors for ...

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Citation: Jespersen L, Abildstrom SZ, Hvelplund A, Madsen JK, Galatius S, Pedersen F, et al. (2014) Burden of Hospital Admission and Repeat Angiography in Angina Pectoris Patients with and without Coronary Artery Disease: A Registry-Based Cohort Study. PLoS ONE 9(4): e93170.

Open access Research Absolute risk and risk factors for ...

Burden of Hospital Admission and Repeat Angiography in ...

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10/1/2008 · Background: Sarcoidosis is a multiorgan granulomatous inflammatory disease of unknown aetiology. Familial clustering of cases and ethnic variation in the epidemiology suggests a genetic influence on susceptibility to the disease. This paper reports twin concordance and heritability estimates of sarcoidosis in order to assess the overall contribution of genetic factors to the disease ...

Burden of Hospital Admission and Repeat Angiography in ...

Heredity in sarcoidosis: a registry-based twin study | Thorax

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STUDY PROTOCOL Open Access Implementation of a population-based epidemiological rare disease registry: study protocol of the amyotrophic lateral sclerosis (ALS) - registry Swabia Gabriele Nagel1*, Hatice Ünal1, Angela Rosenbohm2, Albert C Ludolph2 and Dietrich Rothenbacher1 the ALS Registry Study Group Abstract

Heredity in sarcoidosis: a registry-based twin study | Thorax

STUDY PROTOCOL Open Access Implementation of a population ...

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Lead poisoning is a wholly preventable disease. About This and This educational case study document is one in a series of self- Other Case Studies instructional publications designed to increase the primary care in Environmental provider’s knowledge of hazardous substances in the environment Medicine and to promote the adoption of medical practices that aid in the

STUDY PROTOCOL Open Access Implementation of a population ...

Lead Toxicity Case Studies in Environmental Medicine

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5/3/2012 · REGISTRY - an Observational Study of the European Huntington's Disease Network (EHDN) (REGISTRY) The safety and scientific validity of this study is …

Lead Toxicity Case Studies in Environmental Medicine

REGISTRY - an Observational Study of the European ...

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A Registry-Based Study Lyndell L. Lim,1 Frederick W. Fraunfelder,2 and James T. Rosenbaum2 Objective. Population-based studies of patients greater number of uveitis cases than infliximab (P < with ankylosing spondylitis indicate that tumor necrosis 0.001) and adalimumab (P < 0.01), while no such factor (TNF) inhibitors prevent uveitis ...

REGISTRY - an Observational Study of the European ...

Do tumor necrosis factor inhibitors cause uveitis? A ...

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4/18/2016 · We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand. A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were …

Do tumor necrosis factor inhibitors cause uveitis? A ...

Assessing the feasibility of a web-based registry for ...

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Campylobacteriosis is one of the most commonly identified causes of bacterial diarrheal disease and a common cause of gastroenteritis in travellers from developed nations. Despite the widespread occurrence, there is little information on ... a registry-based linkage study Anders Ternhag*1,2, Anna Törner1, Åke Svensson1,3, Johan Giesecke1,2 ...

Assessing the feasibility of a web-based registry for ...

Mortality following Campylobacter infection: a registry ...

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2/22/2018 · Early relapsed disease of multiple myeloma following up-front HDM-ASCT: a study based on the Danish Multiple Myeloma Registry in the period 2005 to 2014 ... a population-based study of 348 ...

Mortality following Campylobacter infection: a registry ...

Early relapsed disease of multiple myeloma following up ...

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Disease Registry National Surveys for Clinical Outcomes among type 2 diabetes patients and hypertension patients in Thailand from 2010 - 2015 We conducted nationwide hospital-based surveys in Thailand to evaluate the clinical outcomes of type 2 diabetes and …

Early relapsed disease of multiple myeloma following up ...

Disease Registry – MedResNet

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The Agency for Toxic Substances and Disease Registry (ATSDR) ... A 2009 study based on registry data found that posttraumatic stress disorder and asthma were the two most commonly reported conditions among registry participants 5 to 6 years after the disaster. The study found that 19% of adult participants reported new posttraumatic stress ...

Disease Registry – MedResNet

Agency for Toxic Substances and Disease Registry - Wikipedia

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Objectives. To examine long-term associations between constipation and Parkinson’s disease (PD) in men and women, we conducted a population-based cohort study using prospectively collected registry data on hospital contacts for constipation and PD, stratified by follow-up time and sex.

Agency for Toxic Substances and Disease Registry - Wikipedia

Constipation and risk of Parkinson’s disease: A Danish ...

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The Alzheimer’s Disease Registry is one of only three statewide population-based registries of ADRD in the United States and is the most comprehensive and active . Data have been collected on South Carolinians with ADRD since 1988 . The Registry was established and is maintained by

Constipation and risk of Parkinson’s disease: A Danish ...

2018 Annual Report South Carolina Alzheimer’s Disease Registry

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obstructive pulmonary disease (COPD) and severe hypoxemia. No randomized controlled trial has evaluated the net effects (benefits or harms) from LTOT 24h/day compared with 15h/day or the effect in conditions other than COPD. We describe a multicenter, national, phase IV, non-superiority, registry-based, randomized controlled trial (R-RCT) of

2018 Annual Report South Carolina Alzheimer’s Disease Registry

REgistry-based randomized controlled trial of treatment ...

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498 • CID 2006:42 (15 February) • Helms et al. MAJOR ARTICLE Foodborne Bacterial Infection and Hospitalization: A Registry-Based Study Morten Helms,1 Jacob Simonsen,1 and Ka˚re Mølbak2 ...

REgistry-based randomized controlled trial of treatment ...

Foodborne Bacterial Infection and Hospitalization: A ...

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5/21/2013 · Despite the low sensitivity of these data sources, in our study the positive predictive value of myocardial infarction records in primary care and hospital admission sources were over 90% compared with the disease registry gold standard based on the international definition of myocardial infarction (table 2).

Foodborne Bacterial Infection and Hospitalization: A ...

Completeness and diagnostic validity of recording acute ...

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This study aimed to analyse population-based mortality attributed to rare congenital anomalies (CAs) and assess the associated time trends and geographical differences in Spain. Data on CA-related deaths were sourced from annual mortality databases kept by the National Statistics Institute of Spain (1999–2013). Based on the ICD-10, only CAs corresponding to rare diseases definition were ...

Completeness and diagnostic validity of recording acute ...

A Nationwide Registry-Based Study on Mortality Due to Rare ...

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Longitudinal Lipid Trends and Adverse Outcomes in Patients with Chronic Kidney Disease: A 13-Year Observational Cohort Study Using Registry-Based Electronic Medical Records Ching-Wei Tsai 1, Han-Chun Huang 1, Hsiu-Yin Chiang 1 ...

A Nationwide Registry-Based Study on Mortality Due to Rare ...

Longitudinal Lipid Trends and Adverse Outcomes in Patients ...

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Many common DM symptoms become more severe during pregnancy, and women with DM have higher than average miscarriage rates, according to a study commissioned by MDF that examined data from the Myotonic Dystrophy Family Registry and the National Registry for DM and FSHD. Read a summary of the findings written by Katharine Hagerman, PhD, Research Assistant at Stanford University.

Longitudinal Lipid Trends and Adverse Outcomes in Patients ...
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