Real‐World Outcomes and Treatment Patterns in Patients With Acute Myeloid Leukemia and TP53 Gene Mutation or 17p Deletion.
ABSTRACT Many of the children with sickle cell disease born in sub‐Saharan Africa remain undiagnosed and untreated. Increasing capacity and infrastructure to support diagnostic and screening programs in high income countries have enabled near universal survival into adulthood. Early diagnosis and treatment are achievable goals that enjoy widespread consensus in sub‐Saharan Africa but may require a variety of individualized approaches that are specific to each country. A clear understanding of the issues that influence program building is required before identifying solutions adapted to the diverse health care settings in Africa and responsive to the challenges observed during pilot programs.
ABSTRACT Background Persulfate salts in hair bleaches are a well‐documented cause of occupational asthma (OA) among hairdressers, but little information is available on OA caused by hair products containing other low‐molecular‐weight chemicals. The aim of this study was to investigate the prevalence and clinical characteristics of OA caused by oxidative hair dyes containing para‐amino compounds (PACs). Methods This retrospective multicenter study was conducted among 98 hairdressers with OA ascertained by a positive specific inhalation challenge (SIC) with hair products completed between 2006 and 2018 in 14 European tertiary centers. Nine hairdressers (9%) with a positive SIC response to hair dyes containing PACs were identified and reviewed. Results Eight hairdressers developed a bronchial response during “work‐simulation” SICs with hair dyes used at work, whereas one subject was challenged with pure para‐phenylene diamine. The pattern of bronchial reactions was isolated late, dual, and isolated early in four, three, and two subjects, respectively. A significant post‐challenge increase in nonspecific airway hyperresponsiveness was detected in three of the seven (43%) subjects with both pre‐ and post‐SIC measurements available. Among subjects with fractional exhaled nitric oxide measurements ( n = 3) or sputum eosinophil counts ( n = 4) available both before and after the SIC, none showed a significant increase in these airway inflammatory markers. Conclusions Hair dyes containing PACs may contribute substantially to OA among hairdressers. This possibility should be considered carefully when evaluating hairdressers with work‐related asthma symptoms. However, there is a need for further investigation of the underlying inflammatory and immunological mechanisms.
ABSTRACT Down syndrome (DS) is associated with an increased risk for an inflammatory arthritis termed Down syndrome‐associated arthritis (DA). Clinical awareness of DA may prevent morbidity, but there is currently no consensus approach to screen for DA. A DS musculoskeletal (DS‐MSK) screening tool was developed and piloted in clinics to identify inflammatory arthritis in individuals with DS. The prevalence of DA and the feasibility of the DS‐MSK screening tool were also evaluated. Through a non‐randomized, cross‐sectional, multicenter study, patients with DS were enrolled by eight institutions that provide specialized comprehensive care to individuals with DS. A novel tool was developed to screen all patients for DA through DS‐MSK history and DS‐physical exam. Feasibility was assessed through the assessment of additional time the screening tool added to clinical visits. Of the 1111 participants with an average age of 10 years (SD 6.7), there were 1019 pediatric patients and 92 adult patients. There were 62 (6%) positive screens; of those, 21 (34%) were diagnosed with DA by a rheumatologist. Reports of joint swelling, redness, warmth, and stiffness were most associated with a diagnosis of DA. DA is an important consideration in the comprehensive care of individuals with DS. The condition can be aggressive and debilitating if misdiagnosed. We developed a simple, feasible DS‐MSK screening tool that can identify DA. Future studies should focus on a shorter, less time‐consuming tool that maintains positive predictive value for diagnosing DA that can easily be implemented into routine care for people with DS.
ABSTRACT Elective genomic testing (EGT) for medically actionable disease predispositions may help adopted individuals (adoptees) with limited knowledge of family health history (FHH) information understand their inherited risks. In this prospective cohort study, patients who participated in Sanford Health's EGT program were surveyed at the time of enrollment between August 2020 and April 2022 about their motivations for pursuing EGT and perceived risks for three conditions. Data from self‐reported adoptees and nonadoptees were analyzed using bivariate analyses. Of the 5799 eligible patients, 197 (3.4%) reported that they were adopted. Adoptees were more likely than nonadoptees to report lack of information about FHH as a very important motivation for pursuing EGT (81% vs. 32%, p < 0.001) and were more likely to rate it as their most important motivation (45% vs. 5%; p < 0.001). Other motivations, including learning about personal disease risk (72% vs. 61%; p = 0.016) and providing disease risk information to children (69% vs. 57%; p = 0.003), were also more likely to be rated as very important by adoptees than by nonadoptees, respectively. No differences in risk perceptions were observed. A lack of FHH information is an important reason why adoptees pursue EGT. Adoptees may hope that EGT will identify inherited risks for disease.
ABSTRACT This study explores youth violence towards police officers in Australia through the Power Threat Meaning Framework to better understand the underlying factors contributing to such violence; focusing on power dynamics, childhood adversity, and trauma. It examines power dynamics in past and present circumstances and the function of violent behaviours in these encounters. To do this, a content analysis was conducted using court findings and coroner reports of all Australian cases where a person aged 12–24 was found guilty of assaulting a police officer between 2010 and 2023, yielding 40 cases. Six key themes were examined: Power, Threat, Meaning, Exacerbating Factors, and Threat Responses and Functions of Threat Responses . The findings show that young people who assaulted police had substantial disempowerment across the life course, with disrupted attachments, childhood maltreatment, institutional mistrust, and social disadvantage. In the sample, violence predominantly functioned to reclaim a sense of control and power in situations when the young person was confined, unsafe, or disempowered. It is recommended that the pathway to safer interactions between youth and police requires awareness training and policy responses that understand the underlying factors and power imbalance that contribute to and exacerbate negative relations between police officers and young people.
Abstract INTRODUCTION Data sharing among investigators of Alzheimer's disease and related dementias (ADRD) allows for representative datasets, supports reproducibility, and increases rigor. Yet limited evidence on investigators’ practices and experiences precludes solutions that promote optimal practices. METHODS A cross‐sectional survey of US‐based ADRD investigators with National Institutes of Health awards funded between 2016 and 2019. RESULTS Among 585 respondents (response rate of 64.5%), 62.9% were engaged in data sharing in the previous 5 years. Among data requesters, 61.8% reported that all requests were fulfilled within 6 months. Among those who received requests, 85.1% reported fulfilling all requests. Reasons for declining requests included existing data use agreement requirements, Institutional Review Board standards, and resource limitations. Respondents who shared data reported positive consequences (e.g., developing collaborations) more often than negative (e.g., being “scooped”). DISCUSSION Data sharing behaviors among ADRD researchers are encouraging. Nevertheless, addressing remaining barriers could help avoid the negative consequences of data requests not being fulfilled. Highlights Data sharing is critical to advancing research in ADRD. Investigators are engaged in data sharing through initiating or receiving requests. Most data requests initiated or received by ADRD investigators are fulfilled. Investigators who fulfill requests report positive experiences with sharing data. Delay or decline of requests can result in consequences that impede research.