bluuebunny/crossref_metadata_2025_split huggingface dataset:
An auto-ethnographic study of co-produced health research in a patient organisation: unpacking the good, the bad, and the unspoken
Authors: Janssens Astrid , Drachmann Danielle , Barnes-Cullen Kristy , Carrigg Austin , Christesen Henrik Thybo , Futers Becky , Lavery Yvette Ollada , Palms Tiffany , Petersen Jacob Sten , Shah Pratik , Thornton Paul , Wolfsdorf Joseph 
Published: July 2024

Abstract
Background
In rare diseases, limited access to services and rare disease experts may force families to act as medical advocates for their child; they can volunteer to support clinician-initiated research or initiate and lead research themselves. Ketotic Hypoglycemia International (KHI) is a new, global organization for families affected by idiopathic ketotic hypoglycemia (IKH) and is run solely by volunteers. Doing research together, families and international experts in a collaborative process such as at KHI, also referred to as patient and public involvement and engagement (PPIE) or extreme citizen science, is often praised for its positive effects on the research and the stakeholders involved.

Methods
We used auto-ethnographic narratives from parents and medical professionals in KHI to report on their experiences with co-produced health research. All co-authors wrote down their experiences in relation to three topics: time invested, work invested and power dynamics.

Results
Whilst the parents and health care professionals felt a new hope for (their) children with IKH, they also felt pressure to contribute time or to be flexible in how and when they dedicated time towards the organization. The power dynamics were characterised by a change in the relationship between the parents and medical experts; the parent being taught by the expert shifted to the expert learning from the lived experience of the parent. Both parents and medical experts struggled with maintaining boundaries and safeguarding their mental health.

Conclusion
Our findings call for the need to secure and prioritize funding for patient organizations, to enable them to create the sustainable architecture required for meaningful PPIE within these organizations. The morals and often deeply personal reasons for engaging with voluntary work in health research, can lead to overstepping of boundaries. As a result of our research, we call for the development of ethics of care guidelines within collaborative health research.
Comparison between open and closed systems for vitrification of individual sperm: assessing morphometric measurements and chromatin integrity
Authors: Khalili Mohammad Ali , Vatanparast Mahboubeh , Mangoli Esmat , Ghasmi-Esmaeilabad Saeed , Moshrefi Mojgan , Hosseini Akram 
Published: July 2024

Abstract
Background
Classic vitrification methods are not appropriate when there are minimal numbers of viable sperm, and the new methods emphasize the low semen volumes in these cases. The aim was to assess the efficacy of the cryotech as a device for freezing low sperm volume, through the two methods of open (OVS) and closed (CVS) vitrification systems.

Methods
Testicular biopsy samples from 30 men with obstructive azoospermia (OA) were assigned to three groups fresh control (FC), OVS, and CVS. Testicular sperms were selected using an ICSI injection pipette and vitrified on the cryotech straws, containing one droplet of freezing medium. After warming, sperm head morphometric characterizations were evaluated with the MSOME technique. Sperm motility, membrane integrity, chromatin quality assessment including DNA fragmentation, Chromomycine A3 staining (CMA3), and Aniline Blue (AB) were assessed. Fluorescein isothiocyanate-conjugated Pisum sativum agglutinin (FITC-PSA) was done to examine sperm acrosome integrity.

Results
The mean sperm motility, viability, and sperm with intact acrosome reduced after vitrification, in both methods of CVS, and OVS, but the results were more promising in the closed method (p < 0.05). However, the variations were not significant between the two methods of cryopreservation, the OVS undergoes significant head dimensions changes compared to the control group (p < 0.05). The results also showed higher membrane, and chromatin abnormality after OVS (p < 0.05).

Conclusions
The overall post-thaw recovery of human testicular sperm proposes that CVS is more efficient for single sperm cryopreservation, while higher sperm viability, and lower alterations in chromatin, acrosome, and sperm head morphometry were seen compared to OVS.
Implementation fidelity of intravenous ferric carboxymaltose administration for iron deficiency anaemia in pregnancy: a mixed-methods study nested in a clinical trial in Nigeria
Authors: Akinajo Opeyemi R. , Annerstedt Kristi Sidney , Banke-Thomas Aduragbemi , Obi‑Jeff Chisom , Sam-Agudu Nadia A. , Babah Ochuwa A. , Balogun Mobolanle R. , Beňová Lenka , Afolabi Bosede Bukola 
Published: July 2024

Abstract
Background
Iron deficiency anaemia is common among pregnant women in Nigeria. The standard treatment is oral iron therapy, which can be sub-optimal due to side effects. Intravenous ferric carboxymaltose (FCM) is an evidenced-based alternative treatment with a more favourable side effect profile requiring administration according to a standardized protocol. In this study, we assessed the fidelity of administering a single dose of FCM according to protocol and identified factors influencing implementation fidelity.

Methods
We used a mixed-method approach with a sequential explanatory design nested in a clinical trial across 11 facilities in Lagos and Kano States, Nigeria. Guided by a conceptual framework of implementation fidelity, we quantitatively assessed adherence to protocol by directly observing every alternate FCM administration, using an intervention procedure checklist, and compared median adherence by facility and state. Qualitative fidelity assessment was conducted via in-depth interviews with 14 skilled health personnel (SHP) from nine purposively selected health facilities, using a semi-structured interview guide. We analyzed quantitative data using descriptive and inferential statistics in Stata and used thematic analysis to analyze the transcribed interviews in NVivo.

Results
A total of 254 FCM administrations were observed across the 11 study sites, with the majority in secondary (63%), followed by primary healthcare facilities (PHCs) (30%). Overall, adherence to FCM administration as per protocol was moderate (63%) and varied depending on facility level. The lowest level of adherence was observed in PHCs (36%). Median, adherence level showed significant differences by facility level (p = 0.001) but not by state (p = 0.889). Teamwork and availability of protocols are facilitation strategies that contributed to high fidelity. However, institutional/ logistical barriers are contextual factors that influenced the varied fidelity levels observed in some facilities.

Conclusions
Collaborative teams and access to operating protocols resulted in high fidelity in some facilities. However, in some PHCs, fidelity to FCM was low due to contextual factors and intervention complexities, thereby influencing the quality of delivery. In Nigeria, scale-up of FCM will require attention to staff strength, teamwork and availability of administration protocols, in order to optimize its impact on anaemia in pregnancy.
The palace of Charles V in the Alhambra: graphic analysis of the ‘large plan’ (circa 1532)
Authors: Gámiz-Gordo Antonio , García-Ortega Antonio-Jesús 
Published: July 2024

AbstractAround 1526, Emperor Charles V decided to build a new Renaissance palace in addition to the Nasrid palaces in the Alhambra of Granada, a monumental site currently included in the United Nations Educational, Scientific and Cultural Organisation (UNESCO) World Heritage List. In that period, a large floor plan, which is preserved today at the Library of the Royal Palace of Madrid, was drawn to represent the building and its surroundings. Although this anonymous drawing has attracted considerable historiographic interest, a study of the graphical aspects analysed here, namely, paper assemblage, drawing technique, representation system, metrology, graphical scale, dimensioning, and labelling, is lacking. To accomplish this analysis, the original document was carefully examined and digitalised with high definition. This process allowed a comprehensive graphic analysis, utilising other drawings from the same period as a comparative reference and studying for the first time the major characteristics of one of the most relevant architectural drawings of the 16th century.
Mind the diversity: defining intervention concepts of built heritage in international doctrinal documents
Authors: Lin Mi , Roders Ana Pereira , Nevzgodin Ivan , de Jonge Wessel 
Published: July 2024

Abstract
Purpose
Interventions are essential for the management of built heritage because they extend the lifespan of buildings and enable them to be enjoyed by multiple generations. International organisations and institutions, such as UNESCO and ICOMOS, have adopted doctrinal documents over time, stimulating best practices in built heritage management worldwide. Although these documents are often referenced in academic work, they are seldom systematically researched. Which interventions are referenced or omitted? Are they defined? What trends are noted in the understanding of best practices as interventions?

Design/methodology/approach
This research consists of a systematic content analysis of nine international doctrinal documents, which were selected from nearly seventy international doctrinal documents—mainly adopted by UNESCO and ICOMOS. The main aim is to reveal and compare the concepts used for reference interventions and further use the definitions to reveal and discuss the relationships between them. The trends of these interventions being used were determined based on the frequency of mentions per intervention term in the selected documents.

Findings
Regarding the definition of the intervention concepts, there are three main findings. First, instead of being treated as a single concept, ‘conservation’ has been presented as an umbrella concept for other interventions and thus has been the most popular concept since the first version (1992) of the New Zealand Charter was implemented. In contrast, ‘preservation’ remains a single concept, among the highest scales, to maintain the integrity of built heritage, including use. Second, ‘repair’ was found to play a paradoxical role between ‘restoration’ and ‘reconstruction’, which created divergent opinions in the documents. Third, since the notions of ‘use’ have expanded from the functions of monuments (International Charter for the Conservation and Restoration of Monuments and Sites: The Venice Charter, 1964) to the ‘associations of places’ (The Burra Charter: The Australia ICOMOS Charter for Places of Cultural Significance, with associated Guidelines and Code on the Ethics of Co-existence, 1999; The Burra Charter: The Australia ICOMOS Charter for Places of Cultural Significance, 2013), which include activities, traditional habits, accessibility, etc., the complexity of mentioning different forms of ‘use’ has led to some (re)interventions, such as ‘adaptation’, ‘adaptive reuse’, and ‘rehabilitation’, being put into grey areas and used interchangeably.

Originality
This research advances the current understanding of intervention concepts and their relationships, as well as differences and similarities in definitions.
De-escalation treatment of patients with HPV-positive oropharyngeal squamous cell carcinoma.
Authors: Golubev Pavel , Bolotina Larisa , Gevorkov Artem , Deshkina Tatiana , Kuzmina Evgenia , Pokataev Ilya , Galkin Vsevolod 
Published: July 2024

e18052 Background: According to Globocan in 2020 were identified 98 412 new cases of oropharyngeal squamous cell carcinoma in the world. It was proved that the human papillomavirus (HPV) is a favorable prognostic factor. Patients with HPV-positive oropharynx cancer have higher indicators of progression-free survival (PFS) and overall survival (OS). As induction chemotherapy, the only TPF regimen (cisplatin/ docetaxel/ 5-fluorouracil) has been approved which has high toxic profile. Published results of randomized trials demonstrate the possibility of de-escalation CRT without reduction OS and PFS, but there is no data about safety of de-escalated IC regimen. Given the high toxicity of the standard regimen, as well as the presence of a favorable prognostic factor (HPV infection), since 2021 has started a prospective trial, investigating the possibility of use the dual-component IC regimen according to the TP scheme (cisplatin/ docetaxel). Objective: Improve the results of treatment of patients with locally advanced HPV- positive squamous cell carcinoma of the oropharynx by optimizing the scheme IC. Methods: In the prospective trial included 68 patients with p16-positive oropharyngeal squamous cell carcinoma (T3-4N0-1M0, or T1-4N2-3M0), who were divided into 2 equal groups. The research group received 3 cycles of IC to the de-escalated TP regimen and the control group according to the standard three-component TPF regimen. After completion IC patients of both groups had a standard CRT 70 Gy with carboplatin AUC 2.0 weekly. The primary endpoints were the assessment of objective response rate after the IC and toxicity. The Secondary endpoints: 1-year OS and PFS. Results: Complete response (CR) was achieved in 3 patients (8,8%), a partial response (PR) in 22 (64,7%), stable disease (SD) in 8 (23,5%) patients in the research arm. In the control arm: CR 4 patients (11,8%), PR 24 (70,6%), SD 6 (17,6%) patients. Both IC regimens demonstrated high efficacy rates, and there was no statistically significant ORR in the group (p=0,2133).Toxic manifestations were often observed in the arm of standard IC. The higher incidence of mucositis in the control group was statistically significant (p=0,025). The effect of IC regimen on subsequent CRT was also assessed. In the research arm, the time before the start of CRT was statistically significantly less than in the control arm (30 days vs 63 days, p=0,0035.). And the period of development mucositis of CRT in the TP group was longer than in the TPF group (34G vs 32G, p=0,0298). 1 year - PFS 94%, 1 year - OS 100% in the research group and 92% and 100% in the control arm. There was no statistically significant 1 year – PFS and 1 year - OS in the group (р=0,6547). Conclusions: The research scheme of IC demonstrated high results of an objective response, 1-year OS and 1 year - PFS, comparable to the standard TPF scheme, against the background of better tolerance.
Induction chemotherapy with nab-paclitaxel plus nedaplatin plus concurrent chemoradiotherapy in locally advanced nasopharyngeal carcinoma: A retrospective real-world study.
Authors: Fengqin Yan 
Published: July 2024

e18056 Background: Although induction chemotherapy (IC) plus concurrent chemoradiotherapy (CCRT) is recommended as standard treatment option of locally advanced nasopharyngeal carcinoma (NPC), the IC regimens conduct further study. Therefore, this study was evaluated the efficacy and safety of IC with nab-paclitaxel and nedaplatin followed by CCRT in locally advanced NPC. Methods: In this retrospective real-world study, 295 patients was enrolled, and all received nab-paclitaxel (260mg/m2/d) and nedaplatin (80mg/m2/d) –based IC every 3 weeks. Results: All patients completed the treatment plans. The ORR were 95.3% in the NP and 96.9% in the neck after IC, respectively. At the end of CCRT, the ORR were 97.3% in the NP and 97.3% in the neck nodes, respectively. 3 years survival outcomes were 96.4% of OS, 95.7% of LRRFS, 93.7% of DMFS, and 89.8% of PFS, respectively. During IC, all treatment-related adverse events occurred in 43.2%. The most frequent grade 3 toxicities were neutropenia (7.8%), leucopenia (4.4%), anaemia (0.3%), thrombopenia (2.4%) and hepatic injury (3.1%), respectively. Conclusions: IC with nab-paclitaxel and nedaplatin showed promising efficacy and safety profile in locally advanced NPC.
Laryngeal squamous cell carcinoma (LSCC) prognosis and machine learning insights.
Authors: Alshwayyat Sakhr Abdulsalam , Alenezy Abdalwahab , Alshwayyat Mustafa , Alshwayyat Tala Abdulsalam 
Published: July 2024

e18058 Background: LSCC has seen a rise in cases and deaths over the past 30 years. Considering the evolving therapeutic options available in the treatment landscape, we evaluated treatment approaches and developed a machine learning (ML) model for patients with LSCC without distant metastasis. Methods: Data from 2000 to 2020 were obtained from the National Cancer Institute Surveillance, Epidemiology, and End Results database with localized/regional stages only, including the glottis (GC), supraglottic (SuGC), and subglottic (SGC). Patients who were not diagnosed based on histology, previous history of cancer or other concurrent malignancies, or unknown data were excluded. T-tests and chi-square tests were used to compare variables, while the Kaplan-Meier estimator, log-rank tests, and Cox regression analysis identified prognostic factors for overall survival (OS) and cancer-specific survival (CSS). We constructed prognostic models using ML algorithms to predict the 5-year survival. Patient records were randomly divided into training (70 %) and validation (30 %) sets. A validation method incorporating the area under the curve (AUC) of the receiver operating characteristic curve was used to validate the accuracy and reliability of the ML models. Results: A total of 68,282 patients were included (43,434 with GC, 24,010 with SuGC, and 838 with SGC). Of the patients, 80.8% were males and 63.5% were over 60 years old and white (n=56,171). The tumors were >2 cm in size (85.1%). The median patient age was 64 years, and the median tumor size was 3.2 cm. Of these patients, 36.5% underwent surgery with local tumor excision in 23.9 % and total laryngectomy in 5.7% of patients. White race, regional stage, large tumor size, and chemotherapy were poor prognostic factors for GC. Asian ethnicity, white race, and total laryngectomy were good prognostic factors for SuGC, whereas male sex and older age were poor prognostic factors. In terms of SCG "Surgery + adjuvant radiotherapy" was associated with better prognosis while regional and white race were associated with poor prognosis. Performance metrics for all ML algorithms are summarized in the Table. The factors that contributed the most to GC were the surgery type, stage, and age. Stage, surgery type, and race for SuGC and age, stage, and surgery type for SGC. Conclusions: ML models showed promising accuracy in predicting prognosis, highlighting the valuable contributions of factors such as surgery type, stage, age, and race. These findings offer insights into personalized treatment decisions and future research directions. [Table: see text]
Local differences in robustness to ocean acidification
Authors: Padilla Dianna K. , Milke Lisa , Akin-Fajiye Morodoluwa , Rosa Maria , Redman Dylan , Liguori Alyssa , Rugila Allison , Veilleux David , Dixon Mark , Charifson David , Meseck Shannon L. 
Published: July 2024

ABSTRACT
Ocean acidification (OA) caused by increased atmospheric carbon dioxide is affecting marine systems globally and is more extreme in coastal waters. A wealth of research to determine how species will be affected by OA, now and in the future, is emerging. Most studies are discrete and generally do not include the full life cycle of animals. Studies that include the potential for adaptation responses of animals from areas with different environmental conditions and the most vulnerable life stages are needed. Therefore, we conducted experiments with the widely distributed blue mussel, Mytilus edulis, from populations regularly exposed to different OA conditions. Mussels experienced experimental conditions prior to spawning, through embryonic and larval development, both highly vulnerable stages. Survivorship to metamorphosis of larvae from all populations was negatively affected by extreme OA conditions (pH 7.3, Ωar, 0.39, pCO2 2479.74), but, surprisingly, responses to mid OA (pH 7.6, Ωar 0.77, pCO21167.13) and low OA (pH 7.9, Ωar 1.53, pCO2 514.50) varied among populations. Two populations were robust and showed no effect of OA on survivorship in this range. One population displayed the expected negative effect on survivorship with increased OA. Unexpectedly, survivorship in the fourth population was highest under mid OA conditions. There were also significant differences in development time among populations that were unaffected by OA. These results suggest that adaptation to OA may already be present in some populations and emphasizes the importance of testing animals from different populations to see the potential for adaptation to OA.
Randomized Clinical Trial to Increase Self-Monitoring of Physical Activity and Eating Behaviors in Youth: A Feasibility Study
Authors: Ajja Rahma , Skelton Joseph A. , Peluso Alexandra G. , Singletary Camelia R. , Cohen Gail M. , Turner-Mcgrievy Gabrielle , Ip Edward , Miller David , Moore Justin B. 
Published: July 2024

ABSTRACT

Introduction
Mobile health (mHealth) has the potential to reduce reliance on in-person healthcare visits, making monitoring of health, eating, and physical activity less burdensome. There is a great need to develop and test mHealth tools for pediatric weight loss programs to enhance clinical practice. This study aimed to test the feasibility of utilizing a tailored suite of mHealth components to augment an existing evidence-based in-person pediatric weight management program.

Method
Using a two-group randomized superiority trial design, participants who completed baseline measurement were randomized to Brenner Families in Training (Brenner FIT) or Brenner FIT + mHealth (Brenner mFIT), and follow-up measures were completed at 3 and 6 months. Feasibility was assessed in terms of screening, recruitment, randomization, retention, and the assessment process. Acceptability was assessed in terms of program completion, and implementation fidelity was assessed in terms of logging activity, frequency of self-monitoring, goal setting, and retention rate.

Results
Overall, 173 dyads were eligible for enrollment based on inclusion criteria. Twenty-five dyads consented to participate. Sixteen dyads completed baseline psychosocial questionnaires, eight dyads completed at least two 24-h dietary recalls, and 20 (youth) participants returned accelerometers. Of the 14 dyads who completed enrollment, seven dyads were each randomized into the intervention and control groups, with ten and five dyads retained at three and six months, respectively. A total of four caregivers and two youth who utilized the website for goal setting set at least one goal, all seven youth linked their activity tracker, and most downloaded at least one video (two youth) or podcast (six caregivers).

Conclusions
Our results suggest that the assessment protocol was overly burdensome, the intervention had low acceptability, and the study as designed was not feasible to complete. Future studies should evaluate barriers and facilitators to the uptake of mHealth.