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Full-Text Articles in Health Policy

Unlv Mental Health Initiatives: Unifying Through Innovation And Collaboration, The Lincy Institute, Unlv Practice, Behere Nv, Unlv Department Of Psychology Apr 2024

Unlv Mental Health Initiatives: Unifying Through Innovation And Collaboration, The Lincy Institute, Unlv Practice, Behere Nv, Unlv Department Of Psychology

Lincy Institute Events

Nevada persistently ranks at or near the bottom in the country for overall access to mental health services despite the need (Mental Health America, 2015-2023). UNLV faculty are developing initiatives to change this unacceptable situation. The Lincy Institute, in partnership with UNLV PRACTICE, BeHERE Nevada, and researchers from the Department of Psychology, offered a community forum showcasing three mental health initiatives harnessing faculty collaboration and innovation to drive overdue changes in Nevada’s mental-health landscape. Following the presentations policymakers engaged in open discussion with UNLV presenters and the audience. The three main initiatives showcased in this forum …


U.S. Government Agency Podcasts, Bert Chapman Apr 2024

U.S. Government Agency Podcasts, Bert Chapman

Libraries Faculty and Staff Presentations

Presents podcasts from U.S. Government agencies which can be discovered through the U.S. Government Publishing Office's Catalog of Government Publications. Agencies whose podcasts are presented include the National Institutes of Health, U.S. Peace Corps, U.S. Department of Agriculture, Government Accountability Office (GAO), National Park Service, Department of Justice, Federal Reserve System, and U.S. Naval War College.


Harnessing Rna Technology To Advance Therapeutic Vaccine Antigens Against Chagas Disease, Chiara Mancino, Jeroen Pollet, Assaf Zinger, Kathryn M Jones, Maria José Villar, Ana Carolina Leao, Rakesh Adhikari, Leroy Versteeg, Rakhi Tyagi Kundu, Ulrich Strych, Federica Giordano, Peter J Hotez, Maria Elena Bottazzi, Francesca Taraballi, Cristina Poveda Apr 2024

Harnessing Rna Technology To Advance Therapeutic Vaccine Antigens Against Chagas Disease, Chiara Mancino, Jeroen Pollet, Assaf Zinger, Kathryn M Jones, Maria José Villar, Ana Carolina Leao, Rakesh Adhikari, Leroy Versteeg, Rakhi Tyagi Kundu, Ulrich Strych, Federica Giordano, Peter J Hotez, Maria Elena Bottazzi, Francesca Taraballi, Cristina Poveda

Center for Medical Ethics and Health Policy Staff Publications

Chagas disease (CD) (American trypanosomiasis caused by Trypanosoma cruzi) is a parasitic disease endemic in 21 countries in South America, with increasing global spread. When administered late in the infection, the current antiparasitic drugs do not prevent the onset of cardiac illness leading to chronic Chagasic cardiomyopathy. Therefore, new therapeutic vaccines or immunotherapies are under development using multiple platforms. In this study, we assessed the feasibility of developing an mRNA-based therapeutic CD vaccine targeting two known T. cruzi vaccine antigens (Tc24—a flagellar antigen and ASP-2—an amastigote antigen). We present the mRNA engineering steps, preparation, and stability of the lipid …


Evolution Of Telehealth-Its Impact On Palliative Care And Medication Management, Syed N Imam, Ursula K Braun, Mary A Garcia, Leanne K Jackson Apr 2024

Evolution Of Telehealth-Its Impact On Palliative Care And Medication Management, Syed N Imam, Ursula K Braun, Mary A Garcia, Leanne K Jackson

Center for Medical Ethics and Health Policy Staff Publications

Palliative care plays a crucial role in enhancing the quality of life for individuals facing serious illnesses, aiming to alleviate suffering and provide holistic support. With the advent of telehealth, there is a growing interest in leveraging technology to extend the reach and effectiveness of palliative care services. This article provides a comprehensive review of the evolution of telehealth, the current state of telemedicine in palliative care, and the role of telepharmacy and medication management. Herein we highlight the potential benefits, challenges, and future directions of palliative telemedicine. As the field continues to advance, the article proposes key considerations for …


Broken Promises: Prolonged Diminished Quality-Of-Life Among Liberian Ebola Survivors Half A Decade After The 2014-16 West African Outbreak, Jessi Hanson-Defusco, Decontee Davis, Meghana Bommareddy, Zainab Olaniyan Apr 2024

Broken Promises: Prolonged Diminished Quality-Of-Life Among Liberian Ebola Survivors Half A Decade After The 2014-16 West African Outbreak, Jessi Hanson-Defusco, Decontee Davis, Meghana Bommareddy, Zainab Olaniyan

Journal of Social, Behavioral, and Health Sciences

The 2014–2016 Ebola outbreak left thousands of Liberian survivors with severely diminished quality of life. Applying a social determinants framework, this mixed method study investigates to what extent Ebola virus disease (EVD) survivors suffer long-haul psychosocial stress, diminished quality-of-life factors, and the impact of EVD-related service provisions on their ongoing healing. We present the results of a quantitative analysis survey of data collected from 19 Liberian EVD survivors in 2022 using snowball sampling. Additionally, a qualitative analysis of survivor statements helps triangulate key statistical findings and inform causal mechanisms. Survivors report experiencing 5.25 of a total of 7 ongoing stressors …


Voices, Stories And Experiences Of Black Women Phase Ii: Community Engagement Activity Report Informing The Establishment Of A Trenton-Based Maternal & Infant Health Innovation Center, John S. Watson Institute For Urban Policy And Research, Tirzah Spencer, Phd, Mph, Barbara George Johnson Apr 2024

Voices, Stories And Experiences Of Black Women Phase Ii: Community Engagement Activity Report Informing The Establishment Of A Trenton-Based Maternal & Infant Health Innovation Center, John S. Watson Institute For Urban Policy And Research, Tirzah Spencer, Phd, Mph, Barbara George Johnson

Center for Urban Policy Research

As an extension of our 2022 study Voices, Stories and Experiences of Black Women (Phase 1), the John S. Watson Institute for Urban Policy and Research at Kean University’s Maternal and Child Health Equity Team was asked to share information about the planned Maternal and Infant Health Innovation Center (MIHIC) with Trenton residents as a part of Nurture NJ’s community engagement efforts. The Team implemented the following community engagement activities: Communication: Community engagement through social media outreach and in-person outreach were used as approaches to inform Trenton residents about the MIHIC. Dissemination of Findings: Community cafés were designed to share …


Addressing Untimely Healthcare Access Of Veterans Receiving Care Through The Veteran Healthcare Administration (Vha), Frank Lunetta, Jamie Stern, Lila Mcnamee Apr 2024

Addressing Untimely Healthcare Access Of Veterans Receiving Care Through The Veteran Healthcare Administration (Vha), Frank Lunetta, Jamie Stern, Lila Mcnamee

School of Professional Studies

The Veteran Healthcare Administration (VHA) serves over nine million veterans (Department of Veterans Affairs, 2023). They are responsible for the health and well-being of veterans with service-connected disabilities (Department of Veterans Affairs, 2023). A major focus for the organization is to keep improving access for veterans, as the population continues to grow (Department of Veterans Affairs, 2023). In 2018, congress passed the MISSION Act in hopes of increasing access for veterans. The MISSION Act would expand private healthcare access for veterans through the Veteran Community Care Program (VCCP) (MISSION ACT, 2018). Despite the initial benefits of the program, the MISSION …


Health Leadership Perspectives On Challenges To Providing & Expanding Withdrawal Management Capacity In Maine, Sarah Mclaughlin Mph Apr 2024

Health Leadership Perspectives On Challenges To Providing & Expanding Withdrawal Management Capacity In Maine, Sarah Mclaughlin Mph

Substance Use Research & Evaluation

Currently, the Maine Department of Health and Human Services (Maine DHHS) and the Cutler Institute’s Substance Use Research and Evaluation Team (SURE) are working together through the SUPPORT for ME Cooperative Agreement to monitor and assess Maine’s behavioral health system. As a part of this Cooperative Agreement, Maine DHHS and the SURE team have identified withdrawal management (WM) as an area of interest and have determined that more information is needed to understand the landscape of WM in Maine, especially as it pertains to non-opioid substances. Therefore, this project will involve collecting data through interviews with health care leadership from …


Qualitative Brief: Baseline Needs Assessment Treatment Experiences In Rural Vermont, Katie Rosingana Ba, Evelyn Ali Mph, Tyler Egeland Ba, Karen Pearson Mlis, Mary Lindsey Smith Phd, C. Peasley-Miklus, J. Shaw Apr 2024

Qualitative Brief: Baseline Needs Assessment Treatment Experiences In Rural Vermont, Katie Rosingana Ba, Evelyn Ali Mph, Tyler Egeland Ba, Karen Pearson Mlis, Mary Lindsey Smith Phd, C. Peasley-Miklus, J. Shaw

Substance Use Research & Evaluation

This qualitative data brief provides findings from the Vermont baseline needs assessment, conducted in collaboration with research staff at the University of Southern Maine's Catherine Cutler Institute, with the goal to identify current and future opioid use disorder (OUD) treatment needs and barriers in rural Vermont. This data brief aims to identify current and future addiction treatment needs and barriers in Vermont with direct input from practitioners, community partners, and people impacted personally by opioid use. Preceptions included in this data brief are informed by semi-structured qualitative interviews conducted with people with lived experience (PWLE) with OUD, as well as …


Western Maine Addiction And Recovery Initiative's Substance Misuse Prevention And Wellness Day: Year 2 Feedback Survey For Ohchs, Tyler Egeland Ba, Evelyn Ali Bs, Mary Lindsey Smith Phd Apr 2024

Western Maine Addiction And Recovery Initiative's Substance Misuse Prevention And Wellness Day: Year 2 Feedback Survey For Ohchs, Tyler Egeland Ba, Evelyn Ali Bs, Mary Lindsey Smith Phd

Substance Use Research & Evaluation

As part of the evaluation of the Western Maine Addiction Recovery Initiative’s (WMARI) HRSA Rural Communities Opioid Response Program grant, staff from the Substance Use Research & Evaluation Unit, USM developed a survey to gather feedback from individuals who participated in the 2nd annual OHCHS Substance Use Prevention and Wellness Day. For more information, please contact Lindsey Smith at [email protected]


Governmental Affairs Update: Dental Medicaid, Neema Katibai Jd Apr 2024

Governmental Affairs Update: Dental Medicaid, Neema Katibai Jd

The Journal of the Michigan Dental Association

The MDA spearheads an initiative to enhance Medicaid anesthesia services reimbursement, aiming to address the disparity between current rates and commercial standards. Despite recent improvements in Medicaid dental benefits, access to care remains hindered by low anesthesia reimbursement rates. The MDA advocates for a substantial investment to increase reimbursement to 85% of commercial rates, garnering support from various medical associations. This collaborative effort marks a significant stride towards achieving equitable Medicaid reimbursement. Grassroots advocacy is pivotal in influencing state budget decisions, urging constituents to engage with legislators via MDA text alerts.


Impact Of Burnout And Professional Fulfillment On Intent To Leave Among Pediatric Physicians: The Findings Of A Quality Improvement Initiative, R. Thomas Collins Ii, Aric Schadler, Hong Huang, Scottie B. Day, John A. Bauer Apr 2024

Impact Of Burnout And Professional Fulfillment On Intent To Leave Among Pediatric Physicians: The Findings Of A Quality Improvement Initiative, R. Thomas Collins Ii, Aric Schadler, Hong Huang, Scottie B. Day, John A. Bauer

UK CARES Faculty Publications

Background and Objectives Physician burnout is rampant, and physician retention is increasingly hard. It is unclear how burnout impacts intent to leave an organization. We sought to determine how physician burnout and professional fulfillment impact pediatric physicians’ intent to leave (ITL) an organization.

Design and Methods We performed 120, 1:1 semi-structured interviews of our pediatric faculty and used the themes therefrom to develop a Likert-scale based, 22-question battery of their current work experience. We created a faculty climate survey by combining those questions with a standardized instrument that assesses burnout and professional fulfillment. We surveyed pediatric and pediatric-affiliated (e.g. pediatric …


Establishing Consent: The Role Of Women Representatives In Passing Informed Consent Laws, Sophia Stockham Apr 2024

Establishing Consent: The Role Of Women Representatives In Passing Informed Consent Laws, Sophia Stockham

Department of Political Science: Dissertations, Theses, and Student Research

What predicts the adoption of informed consent laws for pelvic exams within the United States? As of January 2023, 22 states have adopted informed consent laws for pelvic examinations on women, with eleven being under Democratic control, six being Republican control, and five with divided control between the legislature and gubernatorial level at the time of adoption. Little attention, however, has been given to women’s health mandates outside the issue of abortion and to variation among state partisan adoption regarding informed consent for pelvic exams. This paper examines the impact of partisanship, the percentage of women in the legislature, and …


The Increase Of Allergies In Developed Countries: A Comparison Of The Quality Of Life And Psychosocial Burden Of Individuals With Food Allergies In Switzerland And The United States Of America, Adrienne Ell Apr 2024

The Increase Of Allergies In Developed Countries: A Comparison Of The Quality Of Life And Psychosocial Burden Of Individuals With Food Allergies In Switzerland And The United States Of America, Adrienne Ell

Independent Study Project (ISP) Collection

The Hygiene Hypothesis suggests that as societies become increasingly sterile and there is less exposure to microorganisms early in life; consequently, there is an increase in inflammatory autoimmune disorders and allergies due to a maladapted immune system to the new sterile environment. This hypothesis can offer a possible explanation for the observed increase in allergies, specifically food allergies, in developed countries. To explore the psychosocial burden of allergies and evaluate the quality of life this paper will explore the food allergen labeling policies for prepackaged foods, the regulation of allergen information for non-prepackaged foods, and the psychosocial burden food allergies …


From Collaboration To Continuity: Exploring Stakeholder Engagement For Sustainable Global Health Partnerships, Annabelle Falconer Apr 2024

From Collaboration To Continuity: Exploring Stakeholder Engagement For Sustainable Global Health Partnerships, Annabelle Falconer

Independent Study Project (ISP) Collection

Global health partnerships have been identified as crucial to achieving the Sustainable Development Goals and targets related to health and wellbeing. Specifically, the Global Fund, UNAIDS Joint Programme, and the World Food Programme are examples of some of the relevant partners currently engaged in this work, filling roles in global health financing, governance, and delivery. Current literature has identified that the effective engagement of stakeholders in partnerships can be crucial in effective project implementation and that global health partnerships during the era of the Millennium Development Goals did impact health outcomes. This research aims to investigate the current strategies for …


Nutri-Score, Warning Signs, And Facts Up Front – In Theory And In Practice A Comparative Analysis Of The Effectiveness Of Front-Of-Package Labeling Systems, Muskaan Makkar Apr 2024

Nutri-Score, Warning Signs, And Facts Up Front – In Theory And In Practice A Comparative Analysis Of The Effectiveness Of Front-Of-Package Labeling Systems, Muskaan Makkar

Independent Study Project (ISP) Collection

Suboptimal diets contribute significantly to poor health and chronic diseases, with excessive sodium intake and low consumption of whole grains, fruits, and vegetables being major risk factors. To address this global nutrition burden, various countries have implemented front-of-package labeling (FOPL) systems such as the Nutri-Score, Warning Signs, and Facts Up Front.

This paper aims to analyze the effectiveness of these systems – which vary in development, design, content, and implementation – in both theory and practice. The methodology involves a comparative analysis of three FOPL systems, assessing their theoretical effectiveness with international guidelines and practical effectiveness through expert interviews and …


Complementariedad En La Comuna De Putre: Reflexiones Sobre El Sistema De Salud Y Los Conocimientos Comunitarios Aymaras, Grace Benish Apr 2024

Complementariedad En La Comuna De Putre: Reflexiones Sobre El Sistema De Salud Y Los Conocimientos Comunitarios Aymaras, Grace Benish

Independent Study Project (ISP) Collection

In the comuna of Putre, which lies in the XV region of Chile, exists a community and culture unique from the rest of the country. Half of the population identifies as part of the Aymara indigenous group, which according to Chilean law, means that a system of intercultural health must exist in the commune. Our objective included establishing the format in which the intercultural system of health functions nowadays and assessing how well the system serves the community, keeping in mind the history of the commune, barriers to access, community needs, and Aymaran culture. Furthermore, the domination of the Aymaran …


What You Should Know About Michigan’S Revised Kindergarten Oral Health Assessment Law, Michele Kawabe Mph, Rd, Cdces Apr 2024

What You Should Know About Michigan’S Revised Kindergarten Oral Health Assessment Law, Michele Kawabe Mph, Rd, Cdces

The Journal of the Michigan Dental Association

Starting from the 2024-25 academic year, Michigan mandates a pre-school oral health assessment for all incoming kindergarten students. Michele Kawabe, MPH, RD, CDCES, explains the legislative change, its implementation through the Kindergarten Oral Health Assessment (KOHA) program, and its potential impact on dental offices. This feature provides insights into frequently asked questions, covering assessment protocols, forms, patient records, reimbursement, and data tracking by the Michigan Department of Health and Human Services (MDHHS).


Non-Urgent Use Of Emergency Departments By Rural And Urban Adults, Erika Ziller Phd, Carly Milkowski, Zachariah Croll, Yvonne Jonk Phd Apr 2024

Non-Urgent Use Of Emergency Departments By Rural And Urban Adults, Erika Ziller Phd, Carly Milkowski, Zachariah Croll, Yvonne Jonk Phd

Access / Insurance

This study, conducted by researchers at the Maine Rural Health Research Center, provides updated information and addresses gaps in knowledge about rural non-urgent ED use. Understanding the rates of non-urgent ED use among rural adults and the factors associated with this use can inform policy and practice efforts to reduce unnecessary and inappropriate use of EDs in rural communities.

Hospital emergency departments (EDs) serve a vital role in the US health care system, providing lifesaving, around-the-clock care to patients in acute health situations. However, use of the ED for non-urgent care is costly and reflects a suboptimal care setting, with …


Clinical And Sociodemographic Characteristics As Predictors For Quality Of Life In Transmasculine And Transfeminine Individuals Receiving Gender-Affirming Hormone Therapy, Saloni U. Lad, Jacob Sinopoli, Britt Conroy, Adam T. Perzynski, Juan P. Del Rincon Apr 2024

Clinical And Sociodemographic Characteristics As Predictors For Quality Of Life In Transmasculine And Transfeminine Individuals Receiving Gender-Affirming Hormone Therapy, Saloni U. Lad, Jacob Sinopoli, Britt Conroy, Adam T. Perzynski, Juan P. Del Rincon

Faculty Scholarship

Healthcare systems and providers have increasingly acknowledged the role and impact of social determinants in overall health. However, gender-diverse individuals face persistent health disparities due to their identities. There is limited research on the impact of clinical and sociodemographic characteristics on mood and quality of life (QoL) for transgender (TG) individuals. Our study aims to understand and better elucidate social and clinical characteristics of transmasculine (TM) and transfeminine (TF) individuals and their impact on quality of life and depressive symptoms. In this cross-sectional study, 298 TF and TM individuals on gender-affirming hormone therapy (GAHT) were surveyed about their demographic characteristics …


Analytical Challenges In Omics Research On Asthma And Allergy: A National Institute Of Allergy And Infectious Diseases Workshop, Supinda Bunyavanich, Patrice M Becker, Matthew C Altman, Jessica Lasky-Su, Carole Ober, Karsten Zengler, Evgeny Berdyshev, Richard Bonneau, Talal Chatila, Nilanjan Chatterjee, Kian Fan Chung, Colleen Cutcliffe, Wendy Davidson, Gang Dong, Gang Fang, Patricia Fulkerson, Blanca E Himes, Liming Liang, Rasika A Mathias, Shuji Ogino, Joseph Petrosino, Nathan D Price, Eric Schadt, James Schofield, Max A Seibold, Hanno Steen, Lisa Wheatley, Hongmei Zhang, Alkis Togias, Kohei Hasegawa Apr 2024

Analytical Challenges In Omics Research On Asthma And Allergy: A National Institute Of Allergy And Infectious Diseases Workshop, Supinda Bunyavanich, Patrice M Becker, Matthew C Altman, Jessica Lasky-Su, Carole Ober, Karsten Zengler, Evgeny Berdyshev, Richard Bonneau, Talal Chatila, Nilanjan Chatterjee, Kian Fan Chung, Colleen Cutcliffe, Wendy Davidson, Gang Dong, Gang Fang, Patricia Fulkerson, Blanca E Himes, Liming Liang, Rasika A Mathias, Shuji Ogino, Joseph Petrosino, Nathan D Price, Eric Schadt, James Schofield, Max A Seibold, Hanno Steen, Lisa Wheatley, Hongmei Zhang, Alkis Togias, Kohei Hasegawa

Center for Medical Ethics and Health Policy Staff Publications

Studies of asthma and allergy are generating increasing volumes of omics data for analysis and interpretation. The National Institute of Allergy and Infectious Diseases (NIAID) assembled a workshop comprising investigators studying asthma and allergic diseases using omics approaches, omics investigators from outside the field, and NIAID medical and scientific officers to discuss the following areas in asthma and allergy research: genomics, epigenomics, transcriptomics, microbiomics, metabolomics, proteomics, lipidomics, integrative omics, systems biology, and causal inference. Current states of the art, present challenges, novel and emerging strategies, and priorities for progress were presented and discussed for each area. This workshop report summarizes …


The Role Of Between-Session Homework In Cognitive-Behavioral Therapy For Comorbid Obsessive-Compulsive Disorder And Autism: A Case Vignette, Molly J Church, Katie H Mangen, Jordan T Stiede, Samuel D Spencer, Eric A Storch Apr 2024

The Role Of Between-Session Homework In Cognitive-Behavioral Therapy For Comorbid Obsessive-Compulsive Disorder And Autism: A Case Vignette, Molly J Church, Katie H Mangen, Jordan T Stiede, Samuel D Spencer, Eric A Storch

Center for Medical Ethics and Health Policy Staff Publications

Objective: Cognitive-behavioral therapy (CBT), which includes a decided emphasis on exposure and response/ritual prevention (ERP) and between-session practice of treatment principles, has consistently demonstrated efficacy for the treatment of obsessive-compulsive disorder (OCD) and is a gold standard, recommended first-line treatment. CBT with ERP has been successfully adapted to fit the needs of autistic individuals with OCD. The present article provides a brief overview of CBT for OCD and outlines special considerations and adaptations needed when working with patients with OCD and comorbid autism, with an emphasis on the importance of between-session homework.

Method: A case vignette is presented.

Results: This …


Genetic Researchers' Use Of And Interest In Research With Diverse Ancestral Groups, Kaitlyn Jaffe, Amanda K Greene, Luyun Chen, Kerry A Ryan, Chris Krenz, J Scott Roberts, Brian J Zikmund-Fisher, Amy L Mcguire, J Denard Thomas, Erica E Marsh, Kayte Spector-Bagdady Apr 2024

Genetic Researchers' Use Of And Interest In Research With Diverse Ancestral Groups, Kaitlyn Jaffe, Amanda K Greene, Luyun Chen, Kerry A Ryan, Chris Krenz, J Scott Roberts, Brian J Zikmund-Fisher, Amy L Mcguire, J Denard Thomas, Erica E Marsh, Kayte Spector-Bagdady

Center for Medical Ethics and Health Policy Staff Publications

Importance: Genetic researchers must have access to databases populated with data from diverse ancestral groups to ensure research is generalizable or targeted for historically excluded communities.

Objective: To determine genetic researchers' interest in doing research with diverse ancestral populations, which database stewards offer adequate samples, and additional facilitators for use of diverse ancestral data.

Design, setting, and participants: This survey study was conducted from June to December 2022 and was part of an exploratory sequential mixed-methods project in which previous qualitative results informed survey design. Eligible participants included genetic researchers who held US academic affiliations and conducted research using human …


Achieving Procedural Parity In Managing Access To Genomic And Related Health Data: A Global Survey Of Data Access Committee Members, Jonathan Lawson, Vasiliki Rahimzadeh, Jinyoung Baek, Edward S Dove Apr 2024

Achieving Procedural Parity In Managing Access To Genomic And Related Health Data: A Global Survey Of Data Access Committee Members, Jonathan Lawson, Vasiliki Rahimzadeh, Jinyoung Baek, Edward S Dove

Center for Medical Ethics and Health Policy Staff Publications

Data access committees (DACs) are critical players in the data sharing ecosystem. DACs review requests for access to data held in one or more repositories and where specific constraints determine how the data may be used and by whom. Our team surveyed DAC members affiliated with genomic data repositories worldwide to understand standard processes and procedures, operational metrics, bottlenecks, and efficiencies, as well as their perspectives on possible improvements to quality review. We found that DAC operations and systemic issues were common across repositories globally. In general, DAC members endeavored to achieve an appropriate balance of review efficiency, quality, and …


Data Stewardship In Ftld Research: Investigator And Research Participant Views, Jalayne J Arias, Ana M Tyler, Laura M Beskow, Maria C Carillo, Susan Dickinson, Jill Goldman, Mary A Majumder, Michelle M Mello, Heather M Snyder, Jennifer S Yokoyama Apr 2024

Data Stewardship In Ftld Research: Investigator And Research Participant Views, Jalayne J Arias, Ana M Tyler, Laura M Beskow, Maria C Carillo, Susan Dickinson, Jill Goldman, Mary A Majumder, Michelle M Mello, Heather M Snyder, Jennifer S Yokoyama

Center for Medical Ethics and Health Policy Staff Publications

Introduction: Federal policies and guidelines have expanded the return of individual results to participants and expectations for data sharing between investigators and through repositories. Here, we report investigators' and study participants' views and experiences with data stewardship practices within frontotemporal lobal degeneration (FTLD) research, which reveal unique ethical challenges.

Methods: Semi-structured interviews with (1) investigators conducting FTLD research that includes genetic data collection and/or analysis and (2) participants enrolled in a single site longitudinal FTLD study.

Results: Analysis of the interviews identified three meta themes: perspectives on data sharing, experiences with enrollment and participation, and data management and security as …


Antitumor Efficacy And Safety Of Unedited Autologous Cd5car T Cells In Relapsed/Refractory Mature T-Cell Lymphomas, Laquisa C Hill, Rayne H Rouce, Mengfen J Wu, Tao Wang, Royce Ma, Huimin Zhang, Birju Mehta, Natalia Lapteva, Zhuyong Mei, Tyler S Smith, Lina Yang, Madhuwanti Srinivasan, Phillip M Burkhardt, Carlos A Ramos, Premal Lulla, Martha Arredondo, Bambi Grilley, Helen E Heslop, Malcolm K Brenner, Maksim Mamonkin Mar 2024

Antitumor Efficacy And Safety Of Unedited Autologous Cd5car T Cells In Relapsed/Refractory Mature T-Cell Lymphomas, Laquisa C Hill, Rayne H Rouce, Mengfen J Wu, Tao Wang, Royce Ma, Huimin Zhang, Birju Mehta, Natalia Lapteva, Zhuyong Mei, Tyler S Smith, Lina Yang, Madhuwanti Srinivasan, Phillip M Burkhardt, Carlos A Ramos, Premal Lulla, Martha Arredondo, Bambi Grilley, Helen E Heslop, Malcolm K Brenner, Maksim Mamonkin

Center for Medical Ethics and Health Policy Staff Publications

Despite newer targeted therapies, patients with primary refractory or relapsed (r/r) T-cell lymphoma have a poor prognosis. The development of chimeric antigen receptor (CAR) T-cell platforms to treat T-cell malignancies often requires additional gene modifications to overcome fratricide because of shared T-cell antigens on normal and malignant T cells. We developed a CD5-directed CAR that produces minimal fratricide by downmodulating CD5 protein levels in transduced T cells while retaining strong cytotoxicity against CD5+ malignant cells. In our first-in-human phase 1 study (NCT0308190), second-generation autologous CD5.CAR T cells were manufactured from patients with r/r T-cell malignancies. Here, we report safety …


Investigating The Roles And Responsibilities Of Institutional Signing Officials After Data Sharing Policy Reform For Federally Funded Research In The United States: National Survey, Jinyoung Baek, Jonathan Lawson, Vasiliki Rahimzadeh Mar 2024

Investigating The Roles And Responsibilities Of Institutional Signing Officials After Data Sharing Policy Reform For Federally Funded Research In The United States: National Survey, Jinyoung Baek, Jonathan Lawson, Vasiliki Rahimzadeh

Center for Medical Ethics and Health Policy Staff Publications

Background: New federal policies along with rapid growth in data generation, storage, and analysis tools are together driving scientific data sharing in the United States. At the same, triangulating human research data from diverse sources can also create situations where data are used for future research in ways that individuals and communities may consider objectionable. Institutional gatekeepers, namely, signing officials (SOs), are therefore at the helm of compliant management and sharing of human data for research. Of those with data governance responsibilities, SOs most often serve as signatories for investigators who deposit, access, and share research data between institutions. Although …


Waiving Snap Interviews During The Covid-19 Pandemic Increased Snap Caseloads, Colleen Heflin, William Fannin, Leonard M. Lopoo, Siobhan O'Keefe Mar 2024

Waiving Snap Interviews During The Covid-19 Pandemic Increased Snap Caseloads, Colleen Heflin, William Fannin, Leonard M. Lopoo, Siobhan O'Keefe

Population Health Research Brief Series

Food insecurity in the United States reached historically high rates during the COVID-19 pandemic, thus substantially increasing demand for the Supplemental Nutrition Assistance Program (SNAP). To facilitate access to SNAP during the pandemic, the federal government granted state SNAP offices the option to waive the interview requirement – an administrative burden associated with the SNAP certification process. This brief summarizes findings from a recent study that used data from SNAP offices across 10 states to examine the impact of SNAP interview waivers on SNAP caseloads from January 5th to April 30th of 2021. Findings reveal that counties that implemented the …


Urban-Rural Differences In School Districts' Local Wellness Policies And Policy Implementation Environments, Swati Iyer, Timothy J Walker, Alexandra L Macmillan Uribe, Chad D Rethorst, Rebecca A Seguin-Fowler, Jacob Szeszulski Mar 2024

Urban-Rural Differences In School Districts' Local Wellness Policies And Policy Implementation Environments, Swati Iyer, Timothy J Walker, Alexandra L Macmillan Uribe, Chad D Rethorst, Rebecca A Seguin-Fowler, Jacob Szeszulski

Faculty, Staff and Student Publications

Higher rates of obesity in rural compared to urban districts suggest environmental differences that affect student health. This study examined urban-rural differences in districts' local wellness policies (LWPs) and LWP implementation environments. Cross-sectional data from two assessments in Texas were analyzed. In assessment one, each district's LWP was reviewed to see if 16 goals were included. In assessment two, an audit was conducted to identify the presence of a wellness plan (a document with recommendations for implementing LWPs), triennial LWP assessment, and school health advisory councils (SHACs) on the district website. Rural districts' LWPs had a smaller number of total …


Rational Prescribing Of Pancreatic Enzymes For Patients With Pancreatic Cancer, Mary Acelle G Garcia, Syed Imam, Ursula K Braun, Leanne K Jackson Mar 2024

Rational Prescribing Of Pancreatic Enzymes For Patients With Pancreatic Cancer, Mary Acelle G Garcia, Syed Imam, Ursula K Braun, Leanne K Jackson

Center for Medical Ethics and Health Policy Staff Publications

Most patients with pancreatic cancer at some point present with symptoms related to exocrine pancreatic insufficiency (EPI). These include diarrhea, abdominal bloating, indigestion, steatorrhea, weight loss, and anorexia. Even though up to 80% of pancreatic cancer patients eventually present with symptoms related to exocrine pancreatic insufficiency, only 21% are prescribed pancreatic enzyme replacement therapy (PERT). Its effectiveness is also highly dependent on its proper timing of administration, and patients must be thoroughly educated about this. The impact of symptoms of EPI can lead to poorer overall well-being. Pharmacists play a crucial role in properly educating patients on the correct use …