scholarly journals Evaluation of the Completeness of ALS Case Ascertainment in the U.S. National ALS Registry: Application of the Capture-Recapture Method

2021 ◽  
Author(s):  
Lorene M. Nelson ◽  
Barbara Topol ◽  
Wendy Kaye ◽  
Jaime Raymond ◽  
D. Kevin Horton ◽  
...  
Keyword(s):  
National Registry ◽  
Case Finding ◽  
People Of Color ◽  
Administrative Claims ◽  
Healthcare Data ◽  
Case Ascertainment ◽  
Control And Prevention ◽  
Capture Recapture ◽  
Als Patients ◽  
The U.S

Introduction: The Centers for Disease Control and Prevention (CDC) National Amyotrophic Lateral Sclerosis (ALS) Registry is the first national registry for a chronic neurologic disease in the U.S. and uses a combination of case-finding methods including administrative healthcare data and patient self-registration. Methods: We applied capture-recapture methodology to estimate the completeness of the Registry for ascertaining patients with ALS for the first full year and the fourth years of the Registry (2011, 2014). The Registry uses the combination of two national administrative claims databases (Medicare and Veterans Affairs) with a self-register option at the registry portal. We conducted descriptive analyses of the demographic and clinical characteristics of the ALS cases identified by each of the sources and estimated the completeness of case ascertainment for each of the three ALS Registry sources individually, pairwise, and in all combinations. Results: Case-finding completeness was 54% in 2011 and improved to 56% in 2014. A smaller proportion of ALS patients under age 65 were ascertained than those 65 or older and ascertainment was also lower for non-White than White patients. The uncorrected ALS prevalence was 4.3/100,000 in 2011 (in 2014 5.0/100,000), but after correction for under-ascertainment, annual prevalence in 2011 was 7.9/100,000 (95% CI 7.6-8.2) (in 2014 was 8.9/100,000 (95% CI 8.7-9.2)). Discussion/Conclusion: Our findings indicate that administrative healthcare databases are a very efficient method for identifying the majority of ALS prevalent cases in the National ALS Registry and that the inclusion of a web registry portal for patients to self-register is important to ensure a more representative population for estimating ALS prevalence. Nonetheless, more than 40% of ALS cases were not ascertained by the Registry, with individuals younger than age 65 and people of color underrepresented. Recommendations are provided for additional methods that can be considered to improve the completeness of case ascertainment.

Abstract 012: Capture-Recapture Using Multiple Data Sources: Estimating the Prevalence of Congenital Heart Disease

Circulation ◽  
2018 ◽  
Vol 137 (suppl_1) ◽  
Author(s):  
Lindsey M Duca ◽  
Amber D Khanna ◽  
Christopher M Rausch ◽  
David Kao ◽  
Tessa Crume
Keyword(s):  
Surveillance System ◽  
Congenital Heart ◽  
Population Based ◽  
Data Sources ◽  
Primary Data ◽  
Case Ascertainment ◽  
Adolescents And Adults ◽  
Capture Recapture ◽  
Crude Prevalence ◽  
The U.S

Introduction: Improvements in the treatment of congenital heart disease (CHD) have resulted in the majority of infants born with CHD surviving into adulthood; completely modifying the epidemiologic profile of patients with CHD. Although the prevalence of CHD at birth has been robustly estimated, the prevalence of CHD in adolescents and adults in the U.S. is uncertain due to a lack of systematically collected population-based data. The unique disjointed healthcare system in the U.S. makes population-based surveillance of conditions like CHD difficult. Hypothesis: Use of capture-recapture methodology in a state-wide CHD surveillance system will result in a higher estimated prevalence of CHD in adolescents and adults by adjusting for incomplete case ascertainment. Methods: Adolescents and adults age 11 to 64 years with a CHD lesion listed as a diagnostic code on an encounter occurring between January 1, 2011 to December 31, 2013 were captured by the Colorado CHD surveillance system. Five primary data sources, representing electronic medical records (EMR) from participating healthcare systems and claims data from the All Payer Claims database, were used for case ascertainment. These sources provide inpatient, outpatient and emergency care across the state of Colorado. Once CHD cases were identified in one of the above data sources, a probabilistic record linkage algorithm was used for de-duplication of cases within and across data sources. Crude prevalence estimates were generated and then capture-recapture methods were employed to estimate the number of adolescents and adults with CHD in Colorado that were not captured in the surveillance system. Data were analyzed using a log-linear model incorporating severity of CHD as a variable of potential heterogeneous catchability. Results: The five primary data sources identified 24,907 CHD cases that met our case definition corresponding to 19,849 unique individuals during our 3-year surveillance period. The observed overall crude prevalence rate of CHD in adolescents and adults was 5.19 per 1000 population (95% CI 5.07 - 5.31 per 1000 population). Using capture-recapture methodology, the estimated prevalence of CHD in adolescents and adults corrected for incomplete case ascertainment was 5.68 per 1000 population (95% CI 5.59 - 5.77 per 1000 population), so an estimated 3,641 CHD cases were not identified in the five primary case finding data sources. Conclusion: Our study provides novel insight into strategies for EMR-based surveillance at the population-level by demonstrating the utility of capture-recapture methodology to estimate, and then correct for, cases missed in standard surveillance techniques.

scholarly journals Tracking U.S. Pertussis Incidence: Correlation of Public Health Surveillance and Google Search Data Varies by State

2019 ◽  
Vol 9 (1) ◽  
Author(s):  
Christopher H. Arehart ◽  
Michael Z. David ◽  
Vanja Dukic
Keyword(s):  
Public Health ◽  
Linear Models ◽  
State Level ◽  
Individual State ◽  
Control And Prevention ◽  
Search Data ◽  
State Models ◽  
Uniform Manner ◽  
Google Search ◽  
The U.S

AbstractThe Morbidity and Mortality Weekly Reports of the U.S. Centers for Disease Control and Prevention document a raw proxy for counts of pertussis cases in the U.S., and the Project Tycho (PT) database provides an improved source of these weekly data. These data are limited because of reporting delays, variation in state-level surveillance practices, and changes over time in diagnosis methods. We aim to assess whether Google Trends (GT) search data track pertussis incidence relative to PT data and if sociodemographic characteristics explain some variation in the accuracy of state-level models. GT and PT data were used to construct auto-correlation corrected linear models for pertussis incidence in 2004–2011 for the entire U.S. and each individual state. The national model resulted in a moderate correlation (adjusted R2 = 0.2369, p < 0.05), and state models tracked PT data for some but not all states. Sociodemographic variables explained approximately 30% of the variation in performance of individual state-level models. The significant correlation between GT models and public health data suggests that GT is a potentially useful pertussis surveillance tool. However, the variable accuracy of this tool by state suggests GT surveillance cannot be applied in a uniform manner across geographic sub-regions.

scholarly journals Mortality in Dementia from 1996 to 2015: A National Registry-Based Cohort Study

2021 ◽  
Vol 79 (1) ◽  
pp. 289-300
Author(s):  
Lærke Taudorf ◽  
Ane Nørgaard ◽  
Gunhild Waldemar ◽  
Thomas Munk Laursen
Keyword(s):  
Elderly People ◽  
Age Groups ◽  
Mortality Rates ◽  
Similar Rate ◽  
National Registry ◽  
Healthcare Data ◽  
Appropriate Care ◽  
People With Dementia ◽  
Rate Ratios ◽  
Annual Mortality

Background: It remains unclear whether the increased focus on improving healthcare and providing appropriate care for people with dementia has affected mortality. Objective: To assess survival and to conduct a time trend analysis of annual mortality rate ratios (MRR) of dementia based on healthcare data from an entire national population. Methods: We assessed survival and annual MRR in all residents of Denmark ≥65 years from 1996–2015 using longitudinal registry data on dementia status and demographics. For comparison, mortality and survival were calculated for acute ischemic heart disease (IHD) and cancer. Results: The population comprised 1,999,366 people (17,541,315 person years). There were 165,716 people (529,629 person years) registered with dementia, 131,321 of whom died. From 1996–2015, the age-adjusted MRR for dementia declined (women: 2.76 to 2.05; men: 3.10 to 1.99) at a similar rate to elderly people without dementia. The sex-, age-, and calendar-year-adjusted MRR was 2.91 (95%CI: 2.90–2.93) for people with dementia. MRR declined significantly more for acute IHD and cancer. In people with dementia, the five-year survival for most age-groups was at a similar level or lower as that for acute IHD and cancer. Conclusion: Although mortality rates declined over the 20-year period, MRR stayed higher for people with dementia, while the MRR gap, compared with elderly people without dementia, remained unchanged. For the comparison, during the same period, the MRR gap narrowed between people with and without acute IHD and cancer. Consequently, initiatives for improving health and decreasing mortality in dementia are still highly relevant.

scholarly journals Food Worker Experiences with and Beliefs about Working While Ill†

2013 ◽  
Vol 76 (12) ◽  
pp. 2146-2154 ◽  
Author(s):  
L. RAND CARPENTER ◽  
ALICE L. GREEN ◽  
DAWN M. NORTON ◽  
ROBERTA FRICK ◽  
MELISSA TOBIN-D'ANGELO ◽  
...  
Keyword(s):  
Disease Control ◽  
Environmental Health ◽  
Foodborne Pathogens ◽  
Work Experience ◽  
Job Loss ◽  
Foodborne Illness ◽  
Job Responsibilities ◽  
Control And Prevention ◽  
Food Workers ◽  
The U.S

Transmission of foodborne pathogens from ill food workers to diners in restaurants is an important cause of foodborne illness outbreaks. The U.S. Food and Drug Administration recommends that food workers with vomiting or diarrhea (symptoms of foodborne illness) be excluded from work. To understand the experiences and characteristics of workers who work while ill, workplace interviews were conducted with 491 food workers from 391 randomly selected restaurants in nine states that participated in the Environmental Health Specialists Network of the Centers for Disease Control and Prevention. Almost 60% of workers recalled working while ill at some time. Twenty percent of workers said that they had worked while ill with vomiting or diarrhea for at least one shift in the previous year. Factors significantly related to workers having said that they had worked while ill with vomiting or diarrhea were worker sex, job responsibilities, years of work experience, concerns about leaving coworkers short staffed, and concerns about job loss. These findings suggest that the decision to work while ill with vomiting or diarrhea is complex and multifactorial.

scholarly journals Retail Deli Slicer Inspection Practices: An EHS-Net Study

2018 ◽  
Vol 81 (5) ◽  
pp. 799-805 ◽  
Author(s):  
LAUREN E. LIPCSEI ◽  
LAURA G. BROWN ◽  
E. RICKAMER HOOVER ◽  
BRENDA V. FAW ◽  
NICOLE HEDEEN ◽  
...  
Keyword(s):  
Food Industry ◽  
The United States ◽  
Cross Contamination ◽  
Prevention Strategies ◽  
Assessment Data ◽  
Worker Training ◽  
The Third ◽  
Control And Prevention ◽  
Retail Food ◽  
The U.S

ABSTRACT The Centers for Disease Control and Prevention (CDC) estimates that 3,000 people die in the United States each year from foodborne illness, and Listeria monocytogenes causes the third highest number of deaths. Risk assessment data indicate that L. monocytogenes contamination of particularly delicatessen meats sliced at retail is a significant contributor to human listeriosis. Mechanical deli slicers are a major source of L. monocytogenes cross-contamination and growth. In an attempt to prevent pathogen cross-contamination and growth, the U.S. Food and Drug Administration (FDA) created guidance to promote good slicer cleaning and inspection practices. The CDC's Environmental Health Specialists Network conducted a study to learn more about retail deli practices concerning these prevention strategies. The present article includes data from this study on the frequency with which retail delis met the FDA recommendation that slicers should be inspected each time they are properly cleaned (defined as disassembling, cleaning, and sanitizing the slicer every 4 h). Data from food worker interviews in 197 randomly selected delis indicate that only 26.9% of workers (n = 53) cleaned and inspected their slicers at this frequency. Chain delis and delis that serve more than 300 customers on their busiest day were more likely to have properly cleaned and inspected slicers. Data also were collected on the frequency with which delis met the FDA Food Code provision that slicers should be undamaged. Data from observations of 685 slicers in 298 delis indicate that only 37.9% of delis (n = 113) had slicers that were undamaged. Chain delis and delis that provide worker training were more likely to have slicers with no damage. To improve slicer practices, food safety programs and the retail food industry may wish to focus on worker training and to focus interventions on independent and smaller delis, given that these delis were less likely to properly inspect their slicers and to have undamaged slicers.

People of Color and Equal Rights

2017 ◽  
Author(s):  
Richard D. Brown
Keyword(s):  
New England ◽  
Supreme Court ◽  
Black Girls ◽  
Professional Standards ◽  
People Of Color ◽  
Free Blacks ◽  
Equal Rights ◽  
Criminal Trials ◽  
Dred Scott ◽  
The U.S

In New England, if anywhere, equal rights might have included people of color. Free blacks comprised a small fraction of the population, and slave uprisings posed no threat. Yet in this region, as in others, racism prevailed. Discrimination in public business, including voting and education, was commonplace. But in criminal trials procedural safeguards and professional standards limited the effects of prejudice. Public opinion was not so restrained. And in rural New England vigilantes shut down New Hampshire’s racially integrated Noyes Academy and Prudence Crandall’s school for black girls in Connecticut. Connecticut banned schools like Crandall’s, she was jailed briefly, and the state’s supreme court denied equal rights for blacks, setting a precedent for the U.S. Supreme Court’s Dred Scott ruling.

scholarly journals Outbreak Medical Mapping and the U.S. Nickel Epidemic: It Is Time to Implement Control and Prevention Measures

2016 ◽  
Vol 4 (1) ◽  
pp. 36-37
Author(s):  
Nikoleta Brankov ◽  
Daniel Bergman ◽  
Alina Goldenberg ◽  
Sharon Jacob
Keyword(s):  
Prevention Measures ◽  
Control And Prevention ◽  
The U.S

NA

scholarly journals Assessing the sensitivity of STD surveillance in the Netherlands: an application of the capture–recapture method

1999 ◽  
Vol 122 (1) ◽  
pp. 97-102 ◽  
Author(s):  
R. REINTJES ◽  
F. TERMORSHUIZEN ◽  
M. J. W. van de LAAR
Keyword(s):  
Public Health ◽  
Health Services ◽  
The Netherlands ◽  
International Comparisons ◽  
Case Finding ◽  
Surveillance Systems ◽  
Health Decisions ◽  
Capture Recapture ◽  
Stratified Analysis ◽  
Municipal Health

The capture–recapture method was used to estimate the sensitivity of case finding in two national STD surveillance systems: (1) STD registration at municipal health services (STD-MHS); (2) statutory notification by clinicians (NNS). To identify those cases common to both surveillance systems, cases from 1995 were compared using individual identifiers. Estimated sensitivities for syphilis were: STD-MHS 31% (95% CI: 27–35%), NNS 64% (56–71%); and for gonorrhoea: STD-MHS 15% (14–18%), NNS 22% (19–25%). The combined sensitivity of both systems was 76% for syphilis and 34% for gonorrhoea. Differences in the sensitivity of the systems were significant. The NNS was more sensitive than the STD-MHS, and the identification of cases was significantly more sensitive for syphilis than for gonorrhoea. A stratified analysis showed comparable results for the two sexes. Knowledge on the sensitivity of surveillance systems is useful for public health decisions and essential for international comparisons.

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