Latino immigrants living in the United States were highly vulnerable to the health and economic consequences brought on by the COVID-19 pandemic. We use the conceptual framing of workplace dignity, worth that is acknowledged based on performance of job responsibilities, to explore Latino immigrants' experiences during the early months of the pandemic. A qualitative study was conducted with (), a community health center serving low-income Latino immigrants.
View Article and Find Full Text PDFBackground: Successful efforts to encourage uptake of subdermal contraceptive implants, with a lifespan of three to five years, necessitate planning to ensure that quality removal services are available when desired. In Burkina Faso, implant use has tripled over the past 8 years and now comprises almost half of the contraceptive method mix. Population Monitoring for Action (PMA) surveys identified barriers to obtaining quality removal when desired, particularly when the implant is not palpable, or providers lack needed skills or supplies.
View Article and Find Full Text PDFMalaria in pregnancy (MiP) is associated with maternal anemia, spontaneous abortion, and infant and maternal death. In Tanzania, MiP service data are collected through routine Malaria Services and Data Quality Improvement (MSDQI) supportive supervision rounds at antenatal care (ANC) facilities. Using structured assessment tools, the U.
View Article and Find Full Text PDFIn Ghana, Community-based Health Planning and Services (CHPS) compounds managed by trained nurses and midwives called community health officers (CHOs) play a major role in malaria service delivery. With heavy administrative burdens and minimal training in providing patient care, particularly for febrile illnesses, including malaria, CHOs struggle to comply with the World Health Organization's test, treat, and track initiative guidelines and appropriate referral practices. A clinical training and mentorship program was implemented for CHOs to prevent and manage uncomplicated malaria and offer appropriate pre-referral treatment and referrals to district hospitals.
View Article and Find Full Text PDFThis study had two aims. Aim one investigated achievement of 10 developmental milestones in children with Bardet-Biedl syndrome (BBS). Aim one data were derived from retrospective responses by caregivers of individuals with BBS who are enrolled in the Clinical Registry Investigating Bardet-Biedl syndrome (CRIBBS).
View Article and Find Full Text PDFIntroduction: Stunning recent increases in subdermal contraceptive implant use, especially in sub-Saharan Africa, necessitate availability of quality implant removal services. In Nigeria, service delivery capacity and coverage for removal are lacking, despite strong government commitment and rapid uptake; there is a dearth of knowledge about barriers to quality implant removals in Nigeria.
Methods: To determine access to and quality of contraceptive implant removal services, a landscape assessment was conducted in two states in Nigeria, focusing on four conditions for quality delineated in the Global Implant Removals Task Force framework.
Introduction: Bardet-Biedl syndrome (BBS) is a rare genetic disease associated with hyperphagia, a pathologic insatiable hunger, due to impaired signaling in the melanocortin-4 receptor (MC4R) pathway. The impact of hyperphagia on the lives of patients with BBS and their families has not been fully characterized.
Methods: Patients with BBS or their caregivers who participated in clinical trials of the MC4R agonist setmelanotide (NCT03013543 and NCT03746522) were included in this qualitative study.
The enhanced choice model of skill-based treatment (ECM-SBT; Rajaraman et al., 2021) is a package of behavioral treatment procedures with modifications designed to reduce risks associated with extinction of problem behavior. The skill-based treatment component of this package (Hanley et al.
View Article and Find Full Text PDFThe aim of this study was to explore kidney failure (KF) in Bardet-Biedl syndrome (BBS), focusing on high-risk gene variants, demographics, and morbidity. We employed the Clinical Registry Investigating BBS (CRIBBS) to identify 44 (7.2%) individuals with KF out of 607 subjects.
View Article and Find Full Text PDFBackground: Overweight and obesity are common features of the rare disease Bardet-Biedl syndrome (BBS). Sleep and physical activity are behaviors that might impact overweight and obesity and thus may play a key role in the health and well-being of people with BBS. Objectively-measured sleep and physical activity patterns in people with BBS are not well known.
View Article and Find Full Text PDFBackground: A phase 2 trial has suggested that treatment with the melanocortin-4 receptor (MC4R) agonist setmelanotide is associated with a decrease in hunger and weight-related outcomes in participants with Bardet-Biedl syndrome (BBS) and Alström syndrome. Here, we present the study design of an ongoing, randomized, double-blind, placebo-controlled, phase 3 trial to assess the long-term efficacy and safety of setmelanotide for the treatment of obesity and hyperphagia in individuals with BBS or Alström syndrome (ClinicalTrials.gov identifier: NCT03746522).
View Article and Find Full Text PDFThere have been few clinical or scientific reports of autosomal dominant tubulointerstitial kidney disease due to REN mutations (ADTKD-REN), limiting characterization. To further study this, we formed an international cohort characterizing 111 individuals from 30 families with both clinical and laboratory findings. Sixty-nine individuals had a REN mutation in the signal peptide region (signal group), 27 in the prosegment (prosegment group), and 15 in the mature renin peptide (mature group).
View Article and Find Full Text PDFBackground: Bardet-Biedl syndrome (BBS) is a rare genetic disorder that severely inhibits primary cilia function. BBS is typified by obesity in adulthood, but pediatric weight patterns, and thus optimal periods of intervention, are poorly understood.
Objectives: To examine body mass differences by age, gender, and genotype in children and adolescents with BBS.
Aim: To report an analysis of ~1 year of setmelanotide treatment for obesity and hunger, as well as metabolic and cardiac outcomes, in individuals with Bardet-Biedl syndrome (BBS).
Materials And Methods: Individuals aged 12 years and older with BBS received once-daily setmelanotide. The dose was titrated every 2 weeks to establish the individual therapeutic dose (≤3 mg); treatment continued for an additional 10 weeks.
Background: Bardet-Biedl syndrome (BBS) is a rare, pleiotropic syndrome and member of a diverse group of disorders known as ciliopathies. Improved understanding of dermatoses in BBS will further understanding of the syndrome and will help define the role of dermatologists in providing care for patients with BBS. The purpose of this study was to describe the cutaneous phenotype of BBS in patients attending a large, multispecialty BBS clinic.
View Article and Find Full Text PDFObjectives: To characterize the diversity and prevalence of thoraco-abdominal abnormalities in Bardet-Biedl syndrome (BBS), a model ciliopathy for understanding the role of cilia in human health.
Study Design: The Clinical Registry Investigating BBS, a worldwide registry exploring the phenotype and natural history of BBS, was used to conduct the study. Protected health information was obtained by subject or family interview and Health Insurance Portability and Accountability Act-approved release of data including imaging studies and genetic testing.
Standardized guidelines for the oral health management of patients with rare diseases exhibiting morphologic anomalies are currently lacking. This review considers Bardet-Biedl syndrome (BBS), a monogenic autosomal recessive nonmotile ciliopathy, as an archetypal condition. Dental anomalies are present in a majority of individuals affected by BBS due to abnormal embryonic orofacial and tooth development.
View Article and Find Full Text PDFBackground: Ethiopia has successfully expanded training for midwives and anesthetists in public institutions. This study explored the perceptions of trainers (instructors, clinical lab assistants and preceptors) towards the adequacy of students' learning experience and implications for achieving mastery of core competencies.
Methods: In-depth interviews with 96 trainers at 9 public universities and 17 regional health science colleges across Ethiopia were conducted to elicit their opinions about available resources, program curriculum suitability, and competence of graduating students.
Fluorination represents an important strategy in developing high-performance conjugated polymers for photovoltaic applications. Here, we use regioregular poly(3-ethylhexylthiophene) (P3EHT) and poly(3-ethylhexyl-4-fluorothiophene) (F-P3EHT) as simplified model materials, using single-molecule/aggregate spectroscopy and molecular dynamic simulations, to elucidate the impacts of backbone fluorination on morphology and excitonic coupling on the molecular scale. Despite its high regioregularity, regioregular P3EHT exhibits a rather broad distribution in polymer chain conformation due to the strong steric hindrance of bulky ethylhexyl side chains.
View Article and Find Full Text PDFBackground: Renal anomalies are common in patients with Bardet-Biedl syndrome (BBS), a renal cystic ciliopathy with multi-systemic features. Renal transplantation is indicated in cases of end-stage renal disease (ESRD), but transplant centers may be hesitant to perform the necessary transplant in light of the multitude of metabolic comorbidities these patients often face with the potential to complicate outcomes.
Methods: Data from the Clinical Registry Investigating BBS (CRIBBS) were used to investigate renal transplant outcomes in the largest BBS cohort described to date.
Genetic methods can complement epidemiological surveys and clinical registries in determining prevalence of monogenic autosomal recessive diseases. Several large population-based genetic databases, such as the NHLBI GO Exome Sequencing Project, are now publically available. By assuming Hardy-Weinberg equilibrium, the frequency of individuals homozygous in the general population for a particular pathogenic allele can be directly calculated from a sample of chromosomes where some harbor the pathogenic allele.
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