scholarly journals Expanding Newborn Screening for Pompe Disease in the United States: The NewSTEPs New Disorders Implementation Project, a Resource for New Disorder Implementation

2020 ◽  
Vol 6 (2) ◽  
pp. 48
Author(s):  
Kshea Hale ◽  
Yvonne Kellar-Guenther ◽  
Sarah McKasson ◽  
Sikha Singh ◽  
Jelili Ojodu
Keyword(s):  
Public Health ◽  
United States ◽  
Newborn Screening ◽  
Pompe Disease ◽  
Technical Assistance ◽  
Genetic Disorders ◽  
Health Resources ◽  
The United States ◽  
Lessons Learned ◽  
Implementation Project

Public health programs in the United States screen more than four million babies each year for at least 30 genetic disorders. The Health and Human Services (HHS) Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommends the disorders for state newborn screening (NBS) programs to screen. ACHDNC updated the Recommended Uniform Screening Panel (RUSP) to include Pompe disease in March 2015. To support the expansion of screening for Pompe disease, the Association of Public Health Laboratories (APHL) proposed the Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) New Disorders Implementation Project, funded by the HHS’ Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB). Through this project, APHL provided financial support to 15 state NBS programs to enable full implementation of screening for Pompe disease. As of April 27, 2020, nine of the 15 programs had fully implemented Pompe disease newborn screening and six programs are currently pursuing implementation. This article will discuss how states advanced to statewide implementation of screening for Pompe disease, the challenges associated with implementing screening for this condition, the lessons learned during the project, and recommendations for implementing screening for Pompe disease.

scholarly journals Development of National Newborn Screening Quality Indicators in the United States

2019 ◽  
Vol 5 (3) ◽  
pp. 34 ◽  
Author(s):  
Careema Yusuf ◽  
Marci K. Sontag ◽  
Joshua Miller ◽  
Yvonne Kellar-Guenther ◽  
Sarah McKasson ◽  
...  
Keyword(s):  
Public Health ◽  
United States ◽  
Newborn Screening ◽  
Quality Indicators ◽  
Technical Assistance ◽  
The United States ◽  
Iterative Refinement ◽  
Data Repository ◽  
Screening System ◽  
Screening Process

Newborn screening is a public health program facilitated by state public health departments with the goal of improving the health of affected newborns throughout the country. Experts in the newborn screening community established a panel of eight quality indicators (QIs) to track quality practices within and across the United States newborn screening system. The indicators were developed following iterative refinement, consensus building, and evaluation. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs) implemented a national data repository in 2013 that captures the quality improvement metrics from each state. The QIs span the newborn screening process from collection of a dried blood spot through medical intervention for a screened condition. These data are collected and analyzed to support data-driven outcome assessments and tracking performance to improve the quality of the newborn screening system.

Biodefense and Emergency Use Authorization: Different Originations, Purposes, and Evolutionary Paths of Institutions in the United States and South Korea

2022 ◽  
Author(s):  
HyunJung Kim
Keyword(s):  
Public Health ◽  
United States ◽  
South Korea ◽  
Driving Forces ◽  
The United States ◽  
Lessons Learned ◽  
Post Exposure Prophylaxis ◽  
Meso Level ◽  
Public Health Emergencies ◽  
Level Analysis

Abstract Background: Historical institutionalism (HI) determines that institutions have been transformed by a pattern of punctuated evolution due to exogenous shocks. Although scholars frequently emphasize the role of agency - endogenous factors – when it comes to institutional changes, but the HI analytic narratives still remain in the meso-level analysis in the context of structure and agency. This article provides domestic and policy-level accounts of where biodefense institutions of the United States and South Korea come from, seeing through emergency-use-authorization (EUA) policy, and how the EUA policies have evolved by employing the policy-learning concepts through the Event-related Policy Change Model. Results: By employing the Birkland’s model, this article complements the limitation of the meso-level analysis in addressing that the 2001 Amerithrax and the 2015 Middle East Respiratory Syndrome (MERS) outbreak rooted originations and purposes of the biodefense respectively. Since the crisis, a new post-crisis agenda in society contributed to establishing new domestic coalition, which begin to act as endogenous driving forces that institutionalize new biodefense institutions and even reinforce them through path dependent way when the institutions evolved. Therefore, EUA policy cores (Post-Exposure Prophylaxis (PEP) in the United States and Non-Pharmaceutical Intervention (NPI) in South Korea keep strengthened during the policy revisions. Conclusions: The United States and South Korea have different originations and purposes of biodefense, which are institutions evolving through self-reinforce dependent way based on the lessons learned from past crises. In sum, under the homeland security biodefense institution, the US EUA focuses on the development of specialized, unlicensed PEP in response to public health emergencies; on the other hand, under the disease containment-centric biodefense institution, the Korean EUA is specialized to conduct NPI missions in response to public health emergencies.

scholarly journals Our Homes, Our Health: Strategies, Insight, and Resources to Support Smoke-Free Multiunit Housing

2020 ◽  
Vol 21 (1_suppl) ◽  
pp. 110S-117S
Author(s):  
Kristen E. Ortega ◽  
Holly Mata
Keyword(s):  
Public Health ◽  
United States ◽  
Tobacco Use ◽  
Secondhand Smoke ◽  
The United States ◽  
Smoke Exposure ◽  
Lessons Learned ◽  
Secondhand Smoke Exposure ◽  
Smoke Free Policy ◽  
Multiunit Housing

Tobacco use remains the single most preventable cause of disease, disability, and death in the United States. Almost 500,000 people die every year in the United States because of tobacco use; approximately one in eight of those deaths are attributable to secondhand smoke exposure. Significant disparities exist in terms of which groups bear the greatest burden of tobacco-related illness and mortality. Reducing tobacco use and exposure in groups most affected and most at risk is a national public health priority. Tobacco control advocates can promote health equity by prioritizing policies that are likely to decrease tobacco use and secondhand smoke exposure and improve access to tobacco cessation resources among populations most at risk for tobacco-related disparities, including people who live in subsidized multiunit housing. In this article, we share the context, process, key milestones, and lessons learned as stakeholders in El Paso, Texas explored and implemented smoke-free policy in subsidized public housing. Partners including the local housing authority, a nonprofit health foundation, the local public health department, and a local university facilitated a thoughtful and community-engaged process that acknowledged the right of residents to breathe clean air in their own homes, potential challenges residents who choose to smoke may face in adapting to smoke-free policy, and the need for support for those who choose to quit. We conclude with five key lessons learned and share resources for other communities, health professionals, and coalitions advocating for and supporting smoke-free housing policy in their communities.

scholarly journals Landscape of Spinal Muscular Atrophy Newborn Screening in the United States: 2018–2021

2021 ◽  
Vol 7 (3) ◽  
pp. 33
Author(s):  
Kshea Hale ◽  
Jelili Ojodu ◽  
Sikha Singh
Keyword(s):  
United States ◽  
Spinal Muscular Atrophy ◽  
Newborn Screening ◽  
Human Services ◽  
Muscular Atrophy ◽  
Genetic Disorders ◽  
The United States ◽  
Life Saving ◽  
Increased Risk ◽  
Review Current

Newborn screening (NBS) programs identify newborns at increased risk for genetic disorders, linking these newborns to timely intervention and potentially life-saving treatment. In the United States, the Health and Human Services (HHS) Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommends the disorders for state NBS programs to screen. ACHDNC updated the Recommended Uniform Screening Panel to include Spinal Muscular Atrophy (SMA) in July 2018. As of June 2021, 34 state NBS programs had fully implemented SMA newborn screening, and at least 8 programs were pursuing implementation. This article will review current SMA screening processes, considerations, challenges, and status.

scholarly journals Establishing a National Community of Practice for Newborn Screening Follow-Up

2021 ◽  
Vol 7 (3) ◽  
pp. 49
Author(s):  
Erin Darby ◽  
John Thompson ◽  
Carol Johnson ◽  
Sikha Singh ◽  
Jelili Ojodu
Keyword(s):  
Public Health ◽  
Newborn Screening ◽  
Community Of Practice ◽  
Resource Sharing ◽  
Information Dissemination ◽  
Technical Assistance ◽  
State Level ◽  
The United States ◽  
National Community

Newborn screening (NBS) follow-up programs in the United States are managed at the state level, leaving limited opportunities for collaboration across programs and coordinated resource sharing. The Newborn Screening Technical assistance and Evaluation Program (NewSTEPs), a program of the Association of Public Health Laboratories (APHL), has established a national community of practice for NBS follow-up by creating a network of follow-up staff and stakeholders through education and engagement opportunities. The activities of NewSTEPs in support of NBS follow-up have strengthened information dissemination, collaboration, data collection and technical assistance-driven mentorship across the national system.

scholarly journals Current status of newborn screening for Pompe disease in Japan

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Takaaki Sawada ◽  
Jun Kido ◽  
Keishin Sugawara ◽  
Ken Momosaki ◽  
Shinichiro Yoshida ◽  
...  
Keyword(s):  
United States ◽  
Newborn Screening ◽  
Pompe Disease ◽  
Autosomal Recessive ◽  
Late Onset ◽  
The United States ◽  
Current Status ◽  
Inherited Metabolic Disorder ◽  
Enzyme Replacement

Abstract Background Pompe disease is an autosomal recessive inherited metabolic disorder caused by a deficiency of the acid α-glucosidase (GAA). Pompe disease manifests as an accumulation of lysosomal glycogen in the skeletal and heart muscle. We conducted newborn screening (NBS) for Pompe disease in Japan from April 2013 to October 2020 to determine the feasibility and utility of NBS for Pompe disease. Results From the 296,759 newborns whose enzyme activity was measured, 107 of which underwent GAA analysis, we found one patient with infantile-onset Pompe disease (IOPD) and seven with potential late-onset Pompe disease (LOPD). We identified 34 pseudodeficient individuals and 65 carriers or potential carriers. The frequency of patients with IOPD was similar to that in the United States, but significantly lower than that in Taiwan. One patient with IOPD underwent early enzyme replacement therapy within a month after birth before presenting exacerbated manifestations, whereas those with potential LOPD showed no manifestations during the follow-up period of six years. Conclusions The frequency of IOPD in Japan was similar to that in the United States, where NBS for Pompe disease is recommended. This indicates that NBS for Pompe disease may also be useful in Japan. Therefore, it should be used over a wider region in Japan.

scholarly journals Current Status of Newborn Screening for Pompe Disease in Japan

2021 ◽  
Author(s):  
Takaaki Sawada ◽  
Jun Kido ◽  
Keishin Sugawara ◽  
Ken Momosaki ◽  
Shinichiro Yoshida ◽  
...  
Keyword(s):  
United States ◽  
Newborn Screening ◽  
Pompe Disease ◽  
Autosomal Recessive ◽  
Late Onset ◽  
The United States ◽  
Current Status ◽  
Inherited Metabolic Disorder ◽  
Enzyme Replacement

Abstract Background: Pompe disease is an autosomal recessive inherited metabolic disorder caused by a deficiency of the acid α-glucosidase (AαGlu). Pompe disease manifests as an accumulation of lysosomal glycogen in the skeletal and heart muscle. We conducted newborn screening (NBS) for Pompe disease in Japan from April 2013 to October 2020 to determine the feasibility and utility of NBS for Pompe disease.Results: From the 296,759 newborns whose enzyme activity was measured, 107 of which underwent GAA analysis, we found one patient with infantile-onset Pompe disease (IOPD) and seven with potential late-onset Pompe disease (LOPD). We identified 34 pseudodeficient individuals and 65 carriers or potential carriers. The frequency of patients with IOPD was similar to that in the United States, but significantly lower than that in Taiwan. One patient with IOPD underwent early enzyme replacement therapy within a month after birth before presenting exacerbated manifestations, whereas those with potential LOPD showed no manifestations during the follow-up period of six years.Conclusions: The frequency of IOPD in Japan was similar to that in the United States, where NBS for Pompe disease is recommended. This indicates that NBS for Pompe disease may also be useful in Japan. Therefore, it should be used over a wider region in Japan.

scholarly journals Coronavirus Disease 2019 (COVID-19) and HIV Spotlight the United States Imperative for Permanent Affordable Housing

2020 ◽  
Author(s):  
Elise D Riley ◽  
Matthew D Hickey ◽  
Elizabeth Imbert ◽  
Angelo A Clemenzi-Allen ◽  
Monica Gandhi
Keyword(s):  
Public Health ◽  
United States ◽  
Affordable Housing ◽  
Job Loss ◽  
The United States ◽  
Lessons Learned ◽  
Health Crisis ◽  
Public Health Crisis ◽  
Hiv Epidemic ◽  
The Many

Abstract Job loss and evictions tied to the Coronavirus Disease 2019 (COVID-19) pandemic are expected to increase homelessness significantly in the coming months. Reciprocally, homelessness and the many vulnerabilities that inevitably accompany it are driving COVID-19 outbreaks in US shelters and other congregate living situations. Unless we intervene to address homelessness, these co-existing and synergistic situations will make the current public health crisis even worse. Preventing homelessness and providing permanent affordable housing has reduced the ravages of the HIV epidemic. We must take the lessons learned in 40 years of fighting HIV to respond effectively to the COVID-19 crisis. Housing is an investment that will curb the spread of COVID-19 and help protect all of us from future pandemics.

scholarly journals Landscape of Congenital Adrenal Hyperplasia Newborn Screening in the United States

2020 ◽  
Vol 6 (3) ◽  
pp. 64
Author(s):  
Sari Edelman ◽  
Hiral Desai ◽  
Trey Pigg ◽  
Careema Yusuf ◽  
Jelili Ojodu
Keyword(s):  
United States ◽  
At Risk ◽  
Congenital Adrenal Hyperplasia ◽  
Newborn Screening ◽  
Technical Assistance ◽  
The United States ◽  
Data Repository ◽  
Adrenal Hyperplasia ◽  
Permanent Disability ◽  
Specific Disorders

Newborn screening (NBS) is a state-based public health program that aims to identify newborns at risk of certain disorders in the first days after birth to prevent permanent disability or death. Disorders on the Health and Human Services Federal Advisory Committee’s Recommended Uniform Screening Panel (RUSP) have been adopted by most state NBS programs; however, each state mandates specific disorders to be screened and implements their own system processes. Congenital adrenal hyperplasia (CAH) was added to the RUSP in 2005, and currently all 53 NBS programs universally screen for it. This paper provides a landscape of CAH screening in the United States, utilizing data voluntarily entered by state NBS programs in the Newborn Screening Technical assistance and Evaluation Program data repository. Data reported encompasses NBS state profile data (follow-up, disorder testing and the reporting of processes and methodologies for screening), quality indicator data (timeliness of CAH NBS) and confirmed cases. This comprehensive landscape analysis compares the CAH NBS systems across the US. This is vital in ultimately ensuring that newborns with CAH at risk of salt crisis receive appropriate intervention in a timely manner.

The COVID-19 Pandemic Exposes Fatal Health Inequities

2020 ◽  
pp. 28-39
Author(s):  
Meredeth Turshen ◽  
Annie Thébaud-Mony
Keyword(s):  
Public Health ◽  
United States ◽  
Health Resources ◽  
Health Inequities ◽  
The United States ◽  
Health Policies ◽  
Current Crisis ◽  
Human Right ◽  
The Past ◽  
The United Kingdom

As stated in the United Nations Universal Declaration of Human Rights, health is a fundamental human right. However, we find ourselves in the midst of the COVID-19 pandemic with a shortage of both human and material health resources, most of which must be sourced from the private sector. Some of the wealthiest countries—France, Italy, Spain, the United Kingdom, and the United States—have proved unable to respond rapidly. The evolution of public health over the past four decades, during which government health policies have reduced health services to commodities and objects of speculative investment, has led to the current crisis.

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