bluuebunny/crossref_metadata_2025_split huggingface dataset:
Experiences of quality of life and access to health services among rare disease caregivers: a scoping review
Authors: Černe Tina , Kragelj Lijana Zaletel , Turk Eva , Pavlič Danica Rotar 
Published: August 2024

Abstract
Background
Research on rare diseases focuses less on caregivers, who play an important role in meeting the medical and social needs of the people they care for. Caregivers of people with rare diseases face negative outcomes due to problems with diagnosis, caring for complex conditions and expensive treatments. However, the factors that affect their quality of life are poorly understood. Poor mental and physical health of caregivers has a direct impact on the person they are caring for.

Methods
To explore the literature on this topic, we conducted a scoping review in which we identified and analysed relevant studies to find out how extensively this topic has been researched. The articles were retrieved from the bibliographic databases PubMed, Ovid Medline and Ebsco Cinahl.

Results
We initially identified 299 references and then included thirty-four articles. The included articles address three main topics, namely caregiver quality of life, health care accessibility, and the impact of health care accessibility on caregiver QOL.

Conclusion
This study provides information that is important to multiple providers of services as it can help to better understand caregivers and people with rare diseases and improve the quality of services offered. It highlights areas with the greatest need for change and offers insight into the complexity of caring for people with rare diseases, assisting policymakers in developing policies to support informal caregivers.
Effectiveness of a cognitive behavioural therapy (CBT)-based intervention for reducing anxiety among adolescents in the Colombo District, Sri Lanka: cluster randomized controlled trial
Authors: De Silva Sinha , Peris Renuka , Senaviratne Sudharshi , Samaranayake Dulani 
Published: August 2024

AbstractAnxiety disorders are found to be the most prevalent psychological problems among children and adolescents. Cognitive behaviour therapy (CBT) was found to be effective at reducing anxiety. The purpose of this study was to assess the effectiveness of a universal school-based intervention for reducing anxiety among Grade 9 schoolchildren. A randomized controlled cluster trial was conducted by randomly assigning 36 schools in the Colombo district in Sri Lanka into study and control arms, each comprising 18 schools with 360 students. The levels of anxiety, self-esteem and depression status were assessed using the validated Screen for Child Anxiety Related Disorders (SCARED) tool and the Rosenberg self-esteem scale, respectively, and the Depression, Anxiety and Stress Scale 21 (DASS-21) at baseline, after intervention, and after 3 months. A CBT-based universal intervention package was administered weekly by a trained teacher for eight weeks with a one-month self-practice period to a randomly selected Grade 9 class in each school in the study arm. The control arm received routine care. Anxiety and self-esteem scores and depression status were compared between the two arms after the intervention and at 3 months of follow-up using the generalized estimation equation (GEE), controlling for confounding and clustering. The nonresponse and loss to follow-up rates were < 1%. When comparing the study arm with the control arm using GEE, anxiety levels were significantly lower [β = (-0.096), 95% CI = (-0.005) − (-0.186), p = 0.038] at follow-up but not postintervention [β = (-0.024), 95% CI = 0.006 − (-0.055), p = 0.115]. There were no significant differences in depression status after intervention (OR = 0.257, 95% CI =0.052–1.286; p = 0.098) or follow-up (OR = 0.422, 95% CI 0.177–1.008; p = 0.052), and self-esteem significantly increased after intervention (β = 0.811, 95% CI = 0.314–1.309; p = 0.001) but not at follow-up [β=0.435, 95% CI=(-0.276)-1.145, p=0.231]. This study revealed that the universal package based on CBT is effective at reducing anxiety and improving self-esteem among adolescents. The trial registration number and date were SLCTR/2018/018 and 19th of June 2018 respectively.
USP36 promotes tumorigenesis and tamoxifen resistance in breast cancer by deubiquitinating and stabilizing ERα
Authors: Zhuang Ting , Zhang Shuqing , Liu Dongyi , Li Zhongbo , Li Xin , Li Jiaoyan , Yang Penghe , Zhang Chenmiao , Cui Jiayao , Fu Mingxi , Shen Fangyu , Yuan Lei , Zhang Zhao , Su Peng , Zhu Jian , Yang Huijie 
Published: August 2024

Abstract
Background
Breast cancer is the most prevalent cancer in women globally. Over-activated estrogen receptor (ER) α signaling is considered the main factor in luminal breast cancers, which can be effectively managed with selective estrogen receptor modulators (SERMs) like tamoxifen. However, approximately 30–40% of ER + breast cancer cases are recurrent after tamoxifen therapy. This implies that the treatment of breast cancer is still hindered by resistance to tamoxifen. Recent studies have suggested that post-translational modifications of ERα play a significant role in endocrine resistance. The stability of both ERα protein and its transcriptome is regulated by a balance between E3 ubiquitin ligases and deubiquitinases. According to the current knowledge, approximately 100 deubiquitinases are encoded in the human genome, but it remains unclear which deubiquitinases play a critical role in estrogen signaling and endocrine resistance. Thus, decoding the key deubiquitinases that significantly impact estrogen signaling, including the control of ERα expression and stability, is critical for the improvement of breast cancer therapeutics.

Methods
We used several ER positive breast cancer cell lines, DUB siRNA library screening, xenograft models, endocrine-resistant (ERα-Y537S) model and performed immunoblotting, real time PCR, RNA sequencing, immunofluorescence, and luciferase activity assay to investigate the function of USP36 in breast cancer progression and tamoxifen resistance.

Results
In this study, we identify Ubiquitin-specific peptidase 36 (USP36) as a key deubiquitinase involved in ERα signaling and the advancement of breast cancer by deubiquitinases siRNA library screening. In vitro and in vivo studies showed that USP36, but not its catalytically inactive mutant (C131A), could promote breast cancer progression through ERα signaling. Conversely, silencing USP36 inhibited tumorigenesis. In models resistant to endocrine therapy, silencing USP36 destabilized the resistant form of ERα (Y537S) and restored sensitivity to tamoxifen. Molecular studies indicated that USP36 inhibited K48-linked polyubiquitination of ERα and enhanced the ERα transcriptome. It is interesting to note that our results suggest USP36 as a novel biomarker for treatment of breast cancer.

Conclusion
Our study revealed the possibility that inhibiting USP36 combined with tamoxifen could provide a potential therapy for breast cancer.
Accelerometer-derived movement features as predictive biomarkers for muscle atrophy in neurocritical care: a prospective cohort study
Authors: Schmidbauer Moritz L. , Putz Timon , Gehri Leon , Ratkovic Luka , Maskos Andreas , Zibold Julia , Bauchmüller Johanna , Imhof Sophie , Weig Thomas , Wuehr Max , Dimitriadis Konstantinos 
Published: August 2024

Abstract
Background
Physical inactivity and subsequent muscle atrophy are highly prevalent in neurocritical care and are recognized as key mechanisms underlying intensive care unit acquired weakness (ICUAW). The lack of quantifiable biomarkers for inactivity complicates the assessment of its relative importance compared to other conditions under the syndromic diagnosis of ICUAW. We hypothesize that active movement, as opposed to passive movement without active patient participation, can serve as a valid proxy for activity and may help predict muscle atrophy. To test this hypothesis, we utilized non-invasive, body-fixed accelerometers to compute measures of active movement and subsequently developed a machine learning model to predict muscle atrophy.

Methods
This study was conducted as a single-center, prospective, observational cohort study as part of the MINCE registry (metabolism and nutrition in neurointensive care, DRKS-ID: DRKS00031472). Atrophy of rectus femoris muscle (RFM) relative to baseline (day 0) was evaluated at days 3, 7 and 10 after intensive care unit (ICU) admission and served as the dependent variable in a generalized linear mixed model with Least Absolute Shrinkage and Selection Operator regularization and nested-cross validation.

Results
Out of 407 patients screened, 53 patients (age: 59.2 years (SD 15.9), 31 (58.5%) male) with a total of 91 available accelerometer datasets were enrolled. RFM thickness changed − 19.5% (SD 12.0) by day 10. Out of 12 demographic, clinical, nutritional and accelerometer-derived variables, baseline RFM muscle mass (beta − 5.1, 95% CI − 7.9 to − 3.8) and proportion of active movement (% activity) (beta 1.6, 95% CI 0.1 to 4.9) were selected as significant predictors of muscle atrophy. Including movement features into the prediction model substantially improved performance on an unseen test data set (including movement features: R2 = 79%; excluding movement features: R2 = 55%).

Conclusion
Active movement, as measured with thigh-fixed accelerometers, is a key risk factor for muscle atrophy in neurocritical care patients. Quantifiable biomarkers reflecting the level of activity can support more precise phenotyping of ICUAW and may direct tailored interventions to support activity in the ICU. Studies addressing the external validity of these findings beyond the neurointensive care unit are warranted.

Trial registration
DRKS00031472, retrospectively registered on 13.03.2023.
Public perspective on potential treatment intervention harm in clinical trials—terminology and communication
Authors: Phillips Rachel , Bi Dongquan , Goulão Beatriz , Miller Marie , El-Askary Malak , Fagbemi Oluyemi , Freeborn Curie , Giammetta Maria , El Masri Noura , Flockhart Peter , Kumar Manos , Melvin Mike , Murray Dianne , Myhill Anthony , Saeid Laila , Thomas Shanice , MacLennan Graeme , Cornelius Victoria 
Published: August 2024

Abstract
Background
Randomised controlled trials (RCTs) are typically designed to determine beneficial intervention effects. In addition, an important aspect of every trial is to collect data on any potential harmful effects, with the aim of ensuring that the benefit-risk balance is appropriate. The language used by trialists to describe these potential harmful effects is inconsistent. In pharmacological trials, researchers collect adverse events; when a causal relationship is suspected adverse events are further classified as adverse reactions. Academic researchers have moved to collectively refer to these as harm outcomes; the pharmaceutical industry refer to these events as safety outcomes. In trials of complex interventions, phrases such as unintended consequences or effects are used. With the inconsistent use of terminology by researchers and the potential benefits to be gained from harmonising communications, we sought public opinion on terminology used to describe harmful effects and how these outcomes are communicated in the scientific literature, as well as in public facing material on medications.

Methods
We held two in-person public involvement meetings with public partners, in London and Aberdeen in 2023. Both meetings followed a pre-specified format. We provided a background to the topic including the information researchers collect on potential harms in clinical trials and shared examples on how this information gets presented in practice. We then discussed public partners’ perspectives on terminology used and communication of intervention harm in academic journals and in public facing materials. A summary of these discussions and the main topics raised by public partners are presented.

Results
Public partners endorsed the use of different terms for different situations, preferring the use of ‘side-effect’ across all contexts and reserving the use of ‘harm’ to indicate more severe events. Generally, public partners were happy with the type of information presented in public facing materials but discussions revealed that presentation of information on public NHS websites led to misconceptions about harm.

Conclusion
This work provides a starting point on preferred terminology by patients and the public to describe potential harmful intervention effects. Whilst researchers have tried to seek agreement, public partners endorsed use of different terms for different situations. We highlight some key areas for improvement in public facing materials that are necessary to avoid miscommunication and incorrect perception of harm.
The relationship between COVID-19 and hyperglycemia: screening and monitoring hospitalized patients
Authors: Salajegheh Faranak , Salajegheh Somayyeh , Nakhaie Mohsen , Farsiu Niloofar , Khoshnazar Seyedeh Mahdieh , Sinaei Reza , Farrokhnia Mehrdad , Torabiyan Soheila 
Published: August 2024

Abstract
Background
Elevated blood glucose concentration, also known as hyperglycemia, has been identified as a significant factor influencing the prognosis of COVID-19, alongside the impact of the SARS-CoV-2 infection itself.

Methods
This research is a cross-sectional investigation that examined the relationship between COVID-19 and hyperglycemia in patients admitted to Afzalipour Hospital in Kerman, Iran, from July to September 2021. A standardized data sheet was used to capture demographic data (age, gender) and laboratory information (blood sugar, arterial blood oxygen saturation, and C-reactive protein (CRP)) upon admission.

Results
The present research evaluated a total of 300 individuals diagnosed with COVID-19, with an average age of 50.19 ± 15.55 years. Among these patients, the majority were male, accounting for 51.67% of the total. Hyperglycemia was seen in 21.67% of patients, but less than 20% had new-onset diabetes. Individuals exhibiting hyperglycemia were typical of advanced age (P < 0.001). Furthermore, there was a slight but statistically significant association between advanced age and elevated blood glucose concentration (R = 0.254, P < 0.001). Gender had no significant impact on the occurrence of hyperglycemia (P = 0.199). There was no significant association between CRP levels and blood glucose concentration (P = 0.524) or the incidence of hyperglycemia (P = 0.473). Although there was no significant disparity in blood oxygen saturation between individuals with or without hyperglycemia (P = 0.06), higher blood glucose concentration was correlated with lower blood oxygen saturation (R = -0.151, P < 0.001).

Conclusion
Considering the correlation between blood glucose concentration, advanced age, and disease severity, it is recommended to carefully screen and monitor all COVID-19 patients for hyperglycemia and new-onset diabetes. Effective management of these complications could enhance the control of patients’ overall prognosis and subsequent complications.
Crowdfunding for innovation: a comprehensive empirical review
Authors: Hoque Md. Mukitul 
Published: August 2024

AbstractCrowdfunding has emerged as a transformative alternative to traditional innovation financing. Limitations of conventional funding sources have led to increased interest in alternative financing mechanisms. Crowdfunding, leveraging online platforms, has democratized access to capital, enabling entrepreneurs to develop products and services that align with broader population needs. This paper surveys the literature, demonstrating how crowdfunding platforms have opened doors to capital for entrepreneurs who might otherwise have found it challenging to secure funding through established channels. While crowdfunding's impact on innovation is multifaceted and contingent on factors like innovation type, entrepreneur quality, and regulatory frameworks, its growth trajectory remains robust, solidifying its significance as a source of entrepreneurial finance. The study aims to (1) analyze the effectiveness of crowdfunding in bridging the funding gap for startups, (2) compare crowdfunding with other forms of entrepreneurial finance, (3) assess crowdfunding’s role in fostering innovation, (4) differentiate between crowdfunding and crowdsourcing, and (5) identify the types of innovation facilitated by crowdfunding. Effective crowdfunding implementation hinges on these factors, necessitating concerted efforts from entrepreneurs, investors, and policymakers to surmount associated challenges and harness its potential for innovation and economic growth. The findings highlight the necessity for a supportive regulatory framework and the importance of transparency and trust in crowdfunding practices. This study underscores the role of policymakers in creating an environment that fosters innovation through alternative financing. However, this study is limited by the availability of comprehensive data across different crowdfunding platforms and regions. Further empirical research is needed to generalize the findings across various contexts, deepen our understanding of crowdfunding's impact on innovation, and develop strategies to leverage the potential of crowdfunding for innovation.
Graphical abstract
Advances in migraine treatment - a review
Authors: Słychan Katarzyna , Frańczuk Agata , Makłowicz Aleksandra , Szpulak Angelika , Kopczyńska Ewelina , Głoskowska Julia , Grzelka Michalina , Kuleta Katarzyna , Łęska Aleksandra Elżbieta , Kejna Paulina 
Published: August 2024

Introduction
Migraine is a heavily debilitating disease that ranks second place in Global Burden Disease. It is estimated that around 1 billion of people suffer from it. It also has a significant negative impact on health-related quality of life (HRQoL) of patients and can affect their social, occupational, academic and familial life. Thus, it is crucial that all of the patients receive an effective treatment.

Objectives
This article aims to review the most recent advances in treatment of migraine.

Methods
A Literature review of articles published in Pubmed between 2000 and 2024 using the following words ‘migraine’, ‘treatment advances’, ‘CGRP receptor antagonists’, ‘serotonin receptor agonists’, ‘lasmiditan’, ‘zavegepant’, ‘rimegepant’.

Results
Literature search provides several concepts of advances in migraine treatment. Apart from behavioral treatment, new drugs targeting calcitonin gene related receptors (CGRP) and serotonin receptors agonists are emerging.

Conclusion
Migraine is a debilitating disease which significantly reduces health related quality of life in patients. New drugs targeting calcitonin gene related receptors (CGRP) and serotonin receptors agonists give a chance for more effective and tailored treatment.
Dimerization enhances cytotoxicity and tumor/non-tumor cell selectivity of juglone
Authors: Mittag Gregor C. , Wiengarn Isabell , Heise Niels V. , Hoenke Sophie , Deigner Hans-Peter , Csuk René 
Published: August 2024

<span lang="DE">The study investigates the biological activity of spaced juglone dimers derived from the reaction of juglone with dicarboxylic acid dichlorides of varying chain lengths. It builds upon the observation that dimeric structures can exhibit enhanced biological activity compared to their monomeric counterparts. The cytotoxic effects of the synthesized compounds were assessed against a range of human cancer cell lines and non-malignant fibroblasts. Results indicate that the cytotoxicity varied depending on the length of the spacer, with specific dimers showing significantly improved activity. Furthermore, these compounds demonstrated a higher selectivity towards cancer cell lines than non-malignant fibroblasts, suggesting potential for targeted anticancer therapy</span><span lang="EN-US">. </span>
DISCUSSÕES SOBRE AS TEORIAS DO ESTADO E POLÍTICAS EDUCACIONAIS
Authors: Lima Paulo Gomes 
Published: August 2024

Muito me alegra elaborar a primeira apresentação do Dossiê com a temática em tela, fruto das reflexões e inferências de estudiosos comprometidos com a educação no Brasil, seja de forma ainda incipiente como pesquisadores, seja como profissionais que exercem os seus saberes e fazeres a partir do interior da escola. A UFSCar historicamente tem aberto espaços de promoção e difusão do conhecimento por diferentes e inovadores meios, como é o caso do presente periódico que oportuniza esse momento de socialização materializado na reunião dos textos que passaremos a apresentar. Esse comprometimento alimenta a sua missão e projeta institucionalmente a pesquisa como princípio educativo, mobilizador de ações interdisciplinares entre docentes – discentes e comunidade.
EXPECTATIVAS DOS PAIS EM RELAÇÃO AO ENSINO FUNDAMENTAL DE NOVE ANOS
Authors: Salles Paulete Zilli Silveira de , Leite Claudineia Martins da Silva , Costa Dayane Prado Paschoal 
Published: August 2024

Este artigo traz a reflexão sobre as mudanças nas políticas educacionais e suas consequências, à luz da pesquisa sobre a alteração do Ensino Fundamental de oito para nove anos e a antecipação da matrícula para crianças de seis anos. Foi realizada pesquisa bibliográfica, embasada em diversos autores que estudam o assunto e também realizada pesquisa de campo através de entrevistas com pais de alunos, para a coleta de informações e opiniões destes sobre sua expectativa a respeito do estudo de seus filhos. O artigo também discorre sobre a Lei de Diretrizes e Bases da Educação n° 9.394/1996, a Lei nº 11.274/2006, as orientações gerais do MEC sobre o Ensino Fundamental de Nove Anos e suas expectativas sobre tais mudanças para a vida escolar das crianças brasileiras. Em todo o momento da pesquisa, fica evidente que a presença e a parceria das famílias junto à escola são o motivo principal do sucesso escolar.
O CONSELHO MUNICIPAL DE EDUCAÇÃO DE SOROCABA/SP: CARACTERIZAÇÃO DO MUNICÍPIO E ESTRUTURA EDUCACIONAL
Authors: Almenara Gilsemara Vasques Rodrigues , Silva Petula Ramanauskas Santorum e 
Published: August 2024

Este estudo está vinculado ao Grupo de Estudos e Pesquisas “Estado, Política, Planejamento, Avaliação e Gestão da Educação” (GEPLAGE), que entre suas várias finalidades pesquisa políticas públicas, com vistas à qualidade de ensino. O presente artigo trata de um recorte da pesquisa na área da política e gestão da educação, cujo objetivo é contextualizar a Educação no município de Sorocaba, seu percurso histórico, bem como apresentar dados estatísticos referentes a Educação do município, atos e marcos legais do Conselho Municipal de Sorocaba/SP e sua forma de atuação e regimento. Para construção deste estudo realizou-se uma pesquisa qualitativa fundamentada em pesquisas bibliográficas e documentais. Finalizamos o artigo com a proposta de reflexão sobre os dados apresentados, suas fragilidades, avanços e perspectivas. Espera-se com este artigo contribuir para a ampliação das informações sobre a Educação no município de Sorocaba/SP e seu Conselho Municipal de Educação.
CONSIDERAÇÕES SOBRE O FILME “COMO ESTRELAS NA TERRA, TODA CRIANÇA É ESPECIAL”
Authors: Santos Jociane Marthendal Oliveira 
Published: August 2024

A obra apresenta o recorte da vida de um aluno com dislexia, suas dificuldades, seu contexto familiar, mas também é uma profunda crítica aos sistemas educacionais e encaminhamentos escolares dados a problemas de aprendizagem. O trabalho é o resultado do esforço do elenco formado por Aamir Khan (Ram Shankar Nikumbh), Darsheel Safary (Ishaan Awasthi), Tanay Chheda (Rajan Damodaran), Alorika Chatterjee (professor de Ciências), Aniket Engineer (Yohan Awasthi) e outros. Esse filme é classificado como drama, foi realizado na Índia no ano de 2007 e possui 140 minutos de duração.