scholarly journals Epidemiology of mucopolysaccharidoses (MPS) in United States: challenges and opportunities

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Yana Puckett ◽  
Alejandra Mallorga-Hernández ◽  
Adriana M. Montaño

Abstract Background Mucopolysaccharidoses (MPS) are rare, inherited lysosomal storage disorders characterized by progressive multiorgan involvement. Previous studies on incidence and prevalence of MPS mainly focused on countries other than the United States (US), showing considerable variation by country. This study aimed to identify MPS incidence and prevalence in the US at a national and state level to guide clinicians and policy makers. Methods This retrospective study examined all diagnosed cases of MPS from 1995 to 2015 in the US using the National MPS Society database records. Data included year of birth, patient geographic location, and MPS variant type. US population information was obtained from the National Center for Health Statistics. The incidence and prevalence rates were calculated for each disease. Incidence rates were calculated for each state. Results We obtained information from 789 MPS patients during a 20-year period. Incidence of MPS in the US was found to be 0.98 per 100,000 live births. Prevalence was found to be 2.67 per 1 million. MPS I, II, and III had the highest incidence rate at birth (0.26/100,000) and prevalence rates of 0.70–0.71 per million. Birth incidences of MPS IV, VI, and VII were 0.14, 0.04 and 0.027 per 100,000 live births. Conclusions This is the most comprehensive review of MPS incidence and prevalence rates in the US. Due to the large US population and state fragmentation, US incidence and prevalence were found to be lower than other countries. Nonetheless, state-level studies in the US supported these figures. Efforts should be focused in the establishment of a national rare disease registry with mandated reporting from every state as well as newborn screening of MPS.

2019 ◽  
Vol 70 (9) ◽  
pp. 1884-1890 ◽  
Author(s):  
Jose A Serpa ◽  
Gabriel N Huynh ◽  
Julie B Nickell ◽  
Hongyu Miao

Abstract Background Human immunodeficiency virus (HIV) pre-exposure prophylaxis (PrEP) decreases HIV transmission. Some studies have raised concerns about a potential association between the implementation of HIV PrEP and the growing incidence rates of sexually transmitted infections (STIs) in the United States. Methods We conducted a quasi-experimental (interrupted time series) analysis of STI (syphilis, gonorrhea, and chlamydia) rates before (2000–2012) and after (2013–2017) the implementation of HIV PrEP. We also performed correlations between HIV PrEP utilization and STI cases at the national (2012–2017) and state (2017) levels. We defined HIV PrEP utilization as the number of people taking tenofovir disoproxil fumarate/emtricitabine for HIV prevention. Results HIV PrEP implementation was associated with 25% (relative risk [RR] 1.254, 95% confidence interval [CI] 1.245–1.263; P < .001) and 26% (RR 1.260, 95% CI 1.257–1.264; P < .001) increases in syphilis and gonorrhea rates, respectively, and a 12% reduction in chlamydia rates (RR: 0.884, 95% CI 0.883–0.885; P < .001). HIV PrEP utilization was correlated with the numbers of syphilis, gonorrhea, and chlamydia cases (spearman coefficients 1.00, 0.94, and 0.94, respectively; P < .001, P < .01, and P < .01, respectively). At the state level, HIV PrEP was also correlated with the number of cases of syphilis, gonorrhea, and chlamydia (spearman coefficients 0.85, 0.81, and 0.85, respectively; Ps < .001 for all correlations). Conclusions The implementation and utilization of HIV PrEP in the United States were associated with increased rates of STIs. Further studies to confirm these associations and to elucidate potential causes are needed.


Religions ◽  
2020 ◽  
Vol 11 (5) ◽  
pp. 260 ◽  
Author(s):  
Lee Marsden

The freedom to practice one’s religious belief is a fundamental human right and yet, for millions of people around the world, this right is denied. Yearly reports produced by the US State Department, United States Commission on International Religious Freedom, Open Doors International, Aid to the Church in Need and Release International reveal a disturbing picture of increased religious persecution across much of the world conducted at individual, community and state level conducted by secular, religious, terrorist and state actors. While religious actors both contribute to persecution of those of other faiths and beliefs and are involved in peace and reconciliation initiatives, the acceptance of the freedom to practice one’s faith, to disseminate that faith and to change one’s faith and belief is fundamental to considerations of the intersection of peace, politics and religion. In this article, I examine the political background of the United States’ promotion of international religious freedom, and current progress on advancing this under the Trump administration. International Religious Freedom (IRF) is contentious, and seen by many as the advancement of US national interests by other means. This article argues that through an examination of the accomplishments and various critiques of the IRF programme it is possible, and desirable, to discover what works, and where further progress needs to be made, in order to enable people around the world to enjoy freedom of thought, conscience and religion.


2020 ◽  
Vol 35 (6) ◽  
pp. 599-603 ◽  
Author(s):  
Colton Margus ◽  
Ritu R. Sarin ◽  
Michael Molloy ◽  
Gregory R. Ciottone

AbstractIntroduction:In 2009, the Institute of Medicine published guidelines for implementation of Crisis Standards of Care (CSC) at the state level in the United States (US). Based in part on the then concern for H1N1 pandemic, there was a recognized need for additional planning at the state level to maintain health system preparedness and conventional care standards when available resources become scarce. Despite the availability of this framework, in the years since and despite repeated large-scale domestic events, implementation remains mixed.Problem:Coronavirus disease 2019 (COVID-19) rejuvenates concern for how health systems can maintain quality care when faced with unrelenting burden. This study seeks to outline which states in the US have developed CSC and which areas of care have thus far been addressed.Methods:An online search was conducted for all 50 states in 2015 and again in 2020. For states without CSC plans online, state officials were contacted by email and phone. Public protocols were reviewed to assess for operational implementation capabilities, specifically highlighting guidance on ventilator use, burn management, sequential organ failure assessment (SOFA) score, pediatric standards, and reliance on influenza planning.Results:Thirty-six states in the US were actively developing (17) or had already developed (19) official CSC guidance. Fourteen states had no publicly acknowledged effort. Eleven of the 17 public plans had updated within five years, with a majority addressing ventilator usage (16/17), influenza planning (14/17), and pediatric care (15/17), but substantially fewer addressing care for burn patients (9/17).Conclusion:Many states lacked publicly available guidance on maintaining standards of care during disasters, and many states with specific care guidelines had not sufficiently addressed the full spectrum of hazard to which their health care systems remain vulnerable.


2013 ◽  
Vol 31 (6_suppl) ◽  
pp. 339-339 ◽  
Author(s):  
Manas Nigam ◽  
Brisa Aschebrook-Kilfoy ◽  
Sergey Shikanov ◽  
Scott E. Eggener

339 Background: The incidence of testicular cancer (TC) increased in the US through 2003. However, little is known about these trends after 2003. We sought to determine trends in TC incidence based on race, ethnicity and tumor characteristics. Methods: TC incidence and tumor characteristic data from 1992-2009 were extracted from the Surveillance, Epidemiology, and End Results-13 (SEER) registry. Trends were determined using JoinPoint. Results: TC incidence in the US increased from 1992 (5.7/100,000) to 2009 (6.8/100,000) with annual percentage change (APC) of 1.1% (p < 0.001). TC rates were highest in non-Hispanic white men (1992: 7.5/100,000; 2009: 8.6/1000) followed by Hispanic men (1992: 4.0/100,000; 2009: 6.3/100,000) and lowest among non-Hispanic black men (1992: 0.7/100,000; 2009: 1.7/100,000). Significantly increasing incidence rates were observed in non-Hispanic white men (1.2%, p < 0.001) but most prominently among Hispanics, especially from 2002-2009 (5.6%, p < 0.01). A significant increase was observed for localized TC (1.21%, p < 0.001) and metastatic TC (1.43%, p < 0.01). Increased incidence occurred in localized tumors for non-Hispanic white men (1.56%, p <0.001), while Hispanic men experienced an increase in localized (2.6%, p < 0.001), regionalized (16.5% from 2002-09, p < 0.01), and distant (2.6%, p < 0.01) disease. Conclusions: Through 2009, testicular cancer incidence continues to increase in the United States, most notably among Hispanic men. [Table: see text]


2009 ◽  
Vol 36 (1) ◽  
pp. 63-67 ◽  
Author(s):  
MICHAEL M. WARD

ObjectiveTo determine if the incidence of endstage renal disease (ESRD) due to lupus nephritis has decreased from 1996 to 2004.MethodsPatients age 15 years or older with incident ESRD due to lupus nephritis in 1996–2004 and living in one of the 50 United States or the District of Columbia were identified using the US Renal Data System, a national population-based registry of all patients receiving renal replacement therapy for ESRD. Incidence rates were computed for each calendar year, using population estimates of the US census as denominators.ResultsOver the 9-year study period, 9199 new cases of ESRD due to lupus nephritis were observed. Incidence rates, adjusted to the age, sex, and race composition of the US population in 2000, were 4.4 per million in 1996 and 4.9 per million in 2004. Compared to the pooled incidence rate in 1996–1998, the relative risk of ESRD due to lupus nephritis in 1999–2000 was 0.99 (95% CI 0.93–1.06), in 2001–2002 was 0.99 (95% CI 0.92–1.06), and in 2003–2004 was 0.96 (95% CI 0.89–1.02). Findings were similar in analyses stratified by sex, age group, race, and socioeconomic status.ConclusionThere was no decrease in the incidence of ESRD due to lupus nephritis between 1996 and 2004. This may reflect the limits of effectiveness of current treatments, or limitations in access, use, or adherence to treatment.


PeerJ ◽  
2017 ◽  
Vol 5 ◽  
pp. e3616 ◽  
Author(s):  
Jacob P. Leinweber ◽  
Hui G. Cheng ◽  
Catalina Lopez-Quintero ◽  
James C. Anthony

BackgroundCannabis use and cannabis regulatory policies recently re-surfaced as noteworthy global research and social media topics, including claims that Mexicans have been sending cannabis and other drug supplies through a porous border into the United States. These circumstances prompted us to conduct an epidemiological test of whether the states bordering Mexico had exceptionally large cannabis incidence rates for 2002–2011. The resulting range of cannabis incidence rates disclosed here can serve as 2002–2011 benchmark values against which estimates from later years can be compared.MethodsThe population under study is 12-to-24-year-old non-institutionalized civilian community residents of the US, sampled and assessed with confidential audio computer-assisted self-interviews (ACASI) during National Surveys on Drug Use and Health, 2002–2011 (aggregaten ∼ 420,000) for which public use datasets were available. We estimated state-specific cannabis incidence rates based on independent replication sample surveys across these years, and derived meta-analysis estimates for 10 pre-specified regions, including the Mexico border region.ResultsFrom meta-analysis, the estimated annual incidence rate for cannabis use in the Mexico Border Region is 5% (95% CI [4%–7%]), which is not an exceptional value relative to the overall US estimate of 6% (95% CI [5%–6%]). Geographically quite distant from Mexico and from states of the western US with liberalized cannabis policies, the North Atlantic Region population has the numerically largest incidence estimate at 7% (95% CI [6%–8%]), while the Gulf of Mexico Border Region population has the lowest incidence rate at 5% (95% CI [4%–6%]). Within the set of state-specific estimates, Vermont’s and Utah’s populations have the largest and smallest incidence rates, respectively (VT: 9%; 95% CI [8%–10%]; UT: 3%; 95% CI [3%–4%]).DiscussionBased on this study’s estimates, among 12-to-24-year-old US community residents, an estimated 6% start to use cannabis each year (roughly one in 16). Relatively minor variation in region-wise and state-level estimates is seen, although Vermont and Utah might be exceptional. As of 2011, proximity to Mexico, to Canada, and to the western states with liberalized policies apparently has induced little variation in cannabis incidence rates. Our primary intent was to create a set of benchmark estimates for state-specific and region-specific population incidence rates for cannabis use, using meta-analysis based on independent US survey replications. Public health officials and policy analysts now can use these benchmark estimates from 2002–2011 for planning, and in comparisons with newer estimates.


PLoS ONE ◽  
2021 ◽  
Vol 16 (4) ◽  
pp. e0250364
Author(s):  
Xiang Y. Han

Legionellosis is an infection acquired through inhalation of aerosols that are contaminated with environmental bacteria Legionella spp. The bacteria require warm temperature for proliferation in bodies of water and moist soil. The legionellosis incidence in the United States has been rising rapidly in the past two decades without a clear explanation. In the meantime, the US has recorded consecutive years of above-norm temperature since 1997 and precipitation surplus since 2008. The present study analyzed the legionellosis incidence in the US during the 20-year period of 1999 to 2018 and correlated with concurrent temperature, precipitation, solar ultraviolet B (UVB) radiation, and vehicle mileage data. The age-adjusted legionellosis incidence rates rose exponentially from 0.40/100,000 in 1999 (with 1108 cases) to 2.69/100,000 in 2018 (with 9933 cases) at a calculated annual increase of 110%. In regression analyses, the rise correlated with an increase in vehicle miles driven and with temperature and precipitation levels that have been above the 1901–2000 mean since 1997 and 2008, respectively, suggesting more road exposure to traffic-generated aerosols and promotive effects of anomalous climate. Remarkably, the regressions with cumulative anomalies of temperature and precipitation were robust (R2 ≥ 0.9145, P ≤ 4.7E-11), implying possible changes to microbial ecology in the terrestrial and aquatic environments. An interactive synergy between annual precipitation and vehicle miles was also found in multiple regressions. Meanwhile, the bactericidal UVB radiation has been decreasing, which also contributed to the rising incidence in an inverse correlation. The 2018 legionellosis incidence peak corresponded to cumulative effects of the climate anomalies, vast vehicle miles (3,240 billion miles, 15904 km per capita), record high precipitation (880.1 mm), near record low UVB radiation (7488 kJ/m2), and continued above-norm temperature (11.96°C). These effects were examined and demonstrated in California, Florida, New Jersey, Ohio, and Wisconsin, states that represent diverse incidence rates and climates. The incidence and above-norm temperature both rose most in cold Wisconsin. These results suggest that warming temperature and precipitation surplus have likely elevated the density of Legionella bacteria in the environment, and together with road exposure explain the rapidly rising incidence of legionellosis in the United States. These trends are expected to continue, warranting further research and efforts to prevent infection.


2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 149-149
Author(s):  
Julia Kravchenko ◽  
Bin Yu ◽  
Igor Akushevich

Abstract There are persisting geographic and racial disparities in life expectancy (LE) across the United States (US). We used 5% Medicare Claims data (2000-2017) to investigate how disease incidence and survival contribute to such disparities. Disease-specific hazard ratios (HRs) were calculated for Medicare beneficiaries living in the US states with the lowest LE (the states with the highest LE were used as a reference group), in gender- and race-/ethnicity-specific populations. Analysis of incidence showed that the greatest contribution to between-the-state disparities in LE was due to higher incidence (HRs≥1.30) of atherosclerosis, heart failure, influenza/pneumonia, Alzheimer’s disease, and lung cancer among older adults living in the states with the lowest LE. The list of diseases that contributed most to LE through the differences in their survival substantially differed from the above listed diseases: namely, diabetes, chronic ischemic heart disease, and cerebrovascular disease had HRs≥1.28 for their respective survival rates, with the highest HRs for lung cancer (HR=1.37, in females) and prostate cancer (HR=1.30). Respective race-/ethnicity-specific patterns of incidence and survival HRs were investigated and diseases contributed most to racial disparities in LE were identified. Study showed that when planning the strategies targeting between-the-state differences in LE in the US, it is important to address both 1) primary and secondary prevention for diseases demonstrating substantial differences in contributions of incidence, and 2) treatment choice, adherence to treatment, and comorbidities for diseases contributing to LE disparities predominantly through the differences in survival. Such strategies can be disease-, race-/ethnicity-, and geographic area-specific.


Author(s):  
Fred S. Lu ◽  
Andre T. Nguyen ◽  
Nicholas B. Link ◽  
Marc Lipsitch ◽  
Mauricio Santillana

AbstractEffectively designing and evaluating public health responses to the ongoing COVID-19 pandemic requires accurate estimation of the weekly incidence of COVID-19. Unfortunately, a lack of systematic testing across the United States (US) due to equipment shortages and varying testing strategies has hindered the usefulness of the reported positive COVID-19 case counts. We introduce three complementary approaches to estimate the cumulative incidence of symptomatic COVID-19 during the early outbreak in each state in the US as well as in New York City, using a combination of excess influenza-like illness reports, COVID-19 test statistics, and COVID-19 mortality reports. Instead of relying on an estimate from a single data source or method that may be biased, we provide multiple estimates, each relying on different assumptions and data sources. Across our three approaches, there is a consistent conclusion that estimated state-level COVID-19 symptomatic case counts from March 1 to April 4, 2020 varied from 5 to 50 times greater than the official positive test counts. Nationally, our estimates of COVID-19 symptomatic cases in the US as of April 4 have a likely range of 2.2 to 5.1 million cases, with possibly as high as 8.1 million cases, up to 26 times greater than the cumulative confirmed cases of about 311,000. Extending our method to May 16, 2020, we estimate that cumulative symptomatic incidence ranges from 6.0 to 12.2 million, which compares with 1.5 million positive test counts. Our approaches demonstrate the value of leveraging existing influenza-like-illness surveillance systems during the flu season for measuring the burden of new diseases that share symptoms with influenza-like-illnesses. Our methods may prove useful in assessing the burden of COVID-19 during upcoming flu seasons in the US and other countries with comparable influenza surveillance systems.


Author(s):  
Abolfazl Mollalo ◽  
Kiara M. Rivera ◽  
Behzad Vahedi

Prediction of the COVID-19 incidence rate is a matter of global importance, particularly in the United States. As of 4 June 2020, more than 1.8 million confirmed cases and over 108 thousand deaths have been reported in this country. Few studies have examined nationwide modeling of COVID-19 incidence in the United States particularly using machine-learning algorithms. Thus, we collected and prepared a database of 57 candidate explanatory variables to examine the performance of multilayer perceptron (MLP) neural network in predicting the cumulative COVID-19 incidence rates across the continental United States. Our results indicated that a single-hidden-layer MLP could explain almost 65% of the correlation with ground truth for the holdout samples. Sensitivity analysis conducted on this model showed that the age-adjusted mortality rates of ischemic heart disease, pancreatic cancer, and leukemia, together with two socioeconomic and environmental factors (median household income and total precipitation), are among the most substantial factors for predicting COVID-19 incidence rates. Moreover, results of the logistic regression model indicated that these variables could explain the presence/absence of the hotspots of disease incidence that were identified by Getis-Ord Gi* (p < 0.05) in a geographic information system environment. The findings may provide useful insights for public health decision makers regarding the influence of potential risk factors associated with the COVID-19 incidence at the county level.


Sign in / Sign up

Export Citation Format

Share Document