Ongoing Data Collection Research Articles

Use of Online Large Language Model Chatbots in Cornea Clinics

Purpose: Online large language model (LLM) chatbots have garnered attention for their potential in enhancing efficiency, providing education, and advancing research. This study evaluated the performance of LLM chatbots—Chat Generative Pre-Trained Transformer (ChatGPT), Writesonic, Google Bard, and Bing Chat—in responding to cornea-related scenarios. Methods: Prompts covering clinic administration, patient counselling, treatment algorithms, surgical management, and research were devised. Responses from LLMs were assessed by 3 fellowship-trained cornea specialists, blinded to the LLM used, using a standardized rubric evaluating accuracy, comprehension, compassion, professionalism, humanness, comprehensiveness, and overall quality. In addition, 12 readability metrics were used to further evaluate responses. Scores were averaged and ranked; subgroup analyses were performed to identify the best-performing LLM for each rubric criterion. Results: Sixty-six responses were generated from 11 prompts. ChatGPT outperformed the other LLMs across all rubric criteria, scoring an overall response score of 3.35 ± 0.42 (83.8%). However, Google Bard excelled in readability, leading in 75% of the metrics assessed. Importantly, no responses were found to pose risks to patients, ensuring the safety and reliability of the information provided. Conclusions: ChatGPT demonstrated superior accuracy and comprehensiveness in responding to cornea-related prompts, whereas Google Bard stood out for its readability. The study highlights the potential of LLMs in streamlining various clinical, administrative, and research tasks in ophthalmology. Future research should incorporate patient feedback and ongoing data collection to monitor LLM performance over time. Despite their promise, LLMs should be used with caution, necessitating continuous oversight by medical professionals and standardized evaluations to ensure patient safety and maximize benefits.

From Daunting to Doable: Tools for Qualitative Evaluation of a Complex Public Health Intervention.

To address complex problems like health disparities, public health interventions have become increasingly ''complex''-engaging multisector partners and communities at multiple ecological levels. Complex interventions are intentionally flexible, making them challenging to evaluate with predetermined measures. While innovative evaluation methods tailored to complex interventions have been developed, there is a need for practical guidance to enhance capacity within public health. This article describes the qualitative FIND (Frame, Identify, Narrow, Do) evaluation process for a complex, community-engaged health equity intervention. Illustrative examples and take-away tools are provided. The FIND process is sensitive to complexity, involving ongoing data collection that helps guide implementation. The evaluator is embedded within the project team, facilitating frequent, direct interaction between the evaluator and those whose roles position them to hear or see happenings with the on-the-ground implementation in real time. The FIND process includes (a) developing a flexible framework for determining relevant processes and outcomes, (b) identifying important project events, (c) narrowing in on the most impactful events, and (d) making decisions informed by data. Using the FIND process, the project team learned about significant project events that would have been missed without a complexity-sensitive approach. Having the evaluator embedded within the project team, rather than as an independent entity, was crucial for understanding and utilizing on-the-ground developments in an evolving intervention. There is a need for more practical guidance to build capacity for evaluating complex public health interventions, including strategies for communicating with stakeholders about approaches that diverge from traditional scientific norms.

An evaluation of the impact of the Lambeth PCN pharmacist anticoagulation skills development project

Abstract Background Atrial Fibrillation (AF) is a prevalent heart condition linked to significant morbidity and mortality due to its association with stroke.1 Despite the clear benefits of anticoagulation in reducing stroke risk, its underuse and suboptimal monitoring remain a concern.2 Aim This study aims to evaluate the impact of a pharmacist-led training programme in Lambeth, London, focusing on improving pharmacists' competency and confidence in managing Direct Oral Anticoagulants (DOACs). It assesses if the training met pharmacists' needs, evaluates current monitoring patterns to determine if training was warranted, and identified areas for further training improvement. Methods The study involved 41 GP practices across 9 Primary Care Networks (PCNs) in Lambeth. Practices were eligible based on their involvement in the management of AF patients prescribed DOACs. All pharmacists at these practices who were actively engaged in anticoagulation management and willing to participate in pre- and post-training assessments were invited to take part. Recruitment involved direct communication through practice managers and emails detailing the study’s objectives and benefits. DOAC monitoring data was extracted from patient medication records and subsequently compared to the South East London anticoagulation guidelines3 to establish compliance percentages. A competency assessment was conducted on pharmacists using a pre- and post-training checklist framework devised by the Consultant Anticoagulant Team at Guy’s and St Thomas’ NHS Foundation Trust (GSTT). The Wilcoxon signed-rank test analysed this paired data, with a p < 0.05 set for statistical significance. Additionally, semi-structured interviews were conducted to gather insights on their training experience and perceptions. Transcripts were coded using NVIVO software to identify themes. Ethical approval was obtained from Kingston University London. Results Of the 2,987 AF patients across the 41 GP practices, 87.6% were on DOACs. Prescribing and monitoring trends were consistent across all GPs, with scope to improve compliance across all parameters, such as CHA₂DS₂-VASc score assessment prior to DOAC initiation. The competency assessment, completed by ten pharmacists, showed a significant improvement post-training, with mean scores rising from 3.3 to 4.1 (p< 0.00001). Improvements were seen across all domains, particularly in explaining the rationale for anticoagulation, showing CHA₂DS₂-VASc and HASBLED scores, and discussing modifiable HASBLED factors. Competency in patient communication remained highest, while managing particular cases like reversal procedures and patients with cancer showed lower competency, indicating areas for training improvement. The interviews, conducted with ten pharmacists, revealed three main themes: (1) Confidence and competence in anticoagulant prescribing and optimisation, (2) Evaluation of the training programme's effectiveness, and (3) Professional growth and career development. Pharmacists reported greater confidence in managing DOACs post-training, though challenges remained in patient engagement and collaboration with GPs lacking DOAC knowledge. Discussion / Conclusion The evaluation proved a positive impact on pharmacists' competency and confidence in DOAC management. Suboptimal monitoring practices in Lambeth highlighted the need for this training programme and its crucial role in improving patient outcomes. Limitations include a small interview sample and potential biases in self-reported evaluations. A longitudinal study is recommended to assess long-term impacts. Ongoing training and systematic data collection are essential, and similar training should be extended to other healthcare professionals.

3.E. Scientific session: Environmental Health Tracking Systems: a tool for planetary health

Abstract Planetary health offers a good framework for better understanding the interconnection between human health and environmental changes, promoting effective cross-sector actions and partnerships, and ensuring policy coherence. Effective implementation of this conceptual framework requires monitoring and reporting on indicators relevant to planetary health that capture the scope, spatial and temporal scales of changes in natural systems that affect human health and well-being. An approach in that sense are the environmental public health tracking systems (EPHT), which imply the ongoing collection, integration, analysis, and interpretation of data at the same spatiotemporal scale about environmental hazards, and related human exposure and health effects, maintaining appropriate data protection measures. It aims to provide public-health decision makers with timely, accurate and systematic data for quantifying health impacts related to environmental factors. EPHT system are proposed as an essential tool for designing and monitoring policies and actions that prevent and reduce environmental health burdens (EHB) efficiently and cost-effectively, and as an alerting system against present and future climatic and health crisis. Pursuing such goals requires the use of health information systems that enable the monitoring and assessing of environmental health in multiple dimensions, considering specificities across different geographical and cultural settings. EPHT system requires defining a rationale on how to select the dimensions and indicators to be included. Common challenges for defining those indicators are related to the availability of data recording, data standardization, and the linkage, integration and sharing of databases. In parallel, it is also important to define a decision aiding tools in which evidence and data are understandable and inform about the extent to which specific policy goals are attained, tailoring such tools to the specific settings. Present session attends to answers to those challenges by sharing experiences from different contexts and countries Key messages • EPHT systems represent an effective tool for progressing in achieving planetary health goals and as a surveillance alerting system for future health crisis. • Adjusting EH data quality recording and analysis in EPHT systems is essential for improving resources assignment, and the effectiveness of healthy policies in reducing EHB.

Exploring female entrepreneurship experience of Ireland’s business ecosystem: implications for business support

PurposeThis paper investigates the motivations and challenges of women entrepreneurs in Ireland, assessing the role of policies and Enterprise Ireland (EI) support for women-led companies and high potential start-ups (HPSUs). It employs the gendered theory of entrepreneurship and opportunity recognition theory to analyse the enablers and obstacles to women’s entrepreneurship, particularly in the context of EI’s support, aiming to suggest improvements.Design/methodology/approachGrounded in a feminist epistemology and employing a mixed-methods approach, a targeted survey explores motivations, barriers and supports the needs of female entrepreneurs in Ireland, offering a comprehensive gender perspective evaluation for policy enhancement.FindingsFindings note a shift in Irish women’s entrepreneurship motivations and outlines major hurdles like limited funding and work–life balance issues. It recommends policy enhancements in data collection, website usability, financial guidance and childcare support.Practical implicationsThis paper aims to highlight the impact of gender-specific factors on entrepreneurship, the study highlights the importance of ongoing data collection and gender comparative analyses. It advocates for women mentoring networks and improved financial support to build a more inclusive entrepreneurial environment in Ireland, with potential global implications.Originality/valueThis study is unique for its in-depth exploration into Irish female entrepreneurship challenges, this study proposes actionable strategies with local and global relevance. Advocating for caregiving support integration and women’s increased involvement in tech, it offers a blueprint for fostering female entrepreneurship. It contributes to global discussions on creating supportive, equitable entrepreneurial ecosystems, serving as a valuable resource for advancing gender inclusivity and equity in entrepreneurship worldwide. It identifies scope for integration of a feminist epistemology in policy development.

Data set for the reporting of lung cancer: recommendations from the International Collaboration on Cancer Reporting (ICCR).

Lung cancer is the leading cause of cancer related deaths worldwide, although some patients with early-stage disease can be cured with surgical resection. Standardised reporting of all clinically relevant pathological parameters is essential for best patient care and is also important for ongoing data collection and refinement of important pathological features that impact patient prognosis, staging and clinical care. Using the established International Collaboration on Cancer Reporting (ICCR) procedure, a representative international expert panel of nine lung pathologists as well as an oncologist was convened. Essential core elements and suggested non-core elements were identified for inclusion in the resected lung cancer pathology data set based on predetermined levels of evidence as well as consensus expert opinion. A lung cancer histopathology reporting guide was developed that includes relevant clinical, macroscopic, microscopic and ancillary testing. Critical review and discussion of current evidence was incorporated into the new data set including changes from the 2021 World Health Organisation (WHO) Classification of Thoracic Tumours, fifth edition, new requirements for grading invasive non-mucinous adenocarcinomas, assessment of response to neoadjuvant therapy and requirements for molecular testing in early-stage resected lung carcinomas. This ICCR data set represents incorporation of all relevant parameters for histology reporting of lung cancer resection specimens. Routine use of this data set is recommended for all pathology reporting of resected lung cancer and it is freely available worldwide on the ICCR website (https://www.iccr-cancer.org/datasets/published-datasets/). Widespread implementation will help to ensure consistent and comprehensive pathology reporting and data collection essential for lung cancer patient care, clinical trials and other research.

Welcome to #SpoonieTok: Understanding and supporting disability expertise storytelling abilities and collective information practices on TikTok and beyond

This work-in-progress poster explores individual and collective storytelling and information creation practices in chronic illness TikTok communities, with the ultimate goal to support these embodied, creative, and multimodal abilities on and off-app through codesigned storytelling support materials. Findings from ongoing data collection and grounded theory coding, include folks’ sharing of disability expertise: using platform features to visualize invisible disability; audio, visual, and community-specific mimetic options. Interviews with 11 community members illuminate how disabled creators on TikTok engage in algorithmically-mediated online health communities, which have slippery boundaries where information can be found serendipitously through algorithmic ranking, and foster opportunities to develop storytelling skills.

DICER1-Related Tumor Predisposition: Identification of At-risk Individuals and Recommended Surveillance Strategies.

DICER1-related tumor predisposition increases risk for a spectrum of benign and malignant tumors. In 2018, the International Pleuropulmonary Blastoma (PPB)/DICER1 Registry published guidelines for testing and imaging-based surveillance of individuals with a known or suspected germline DICER1 pathogenic or likely pathogenic (P/LP) variant. One of the Registry's goals is to continue to refine these guidelines as additional data becomes available. Individuals were enrolled in the International PPB/DICER1 Registry, the International Ovarian and Testicular Stromal Tumor Registry, and/or the National Cancer Institute Natural History of DICER1 Syndrome study. Review of participant records identified 713 participants with a germline DICER1 P/LP variant from 38 countries. To date, 5 cases of type I and 29 cases of type Ir PPB have been diagnosed by surveillance in enrolled individuals. One hundred and three individuals with a germline P/LP variant developed a primary ovarian Sertoli-Leydig cell tumor (SLCT) at a median age of 14 years (range: 11 months-66 years); 13% were diagnosed under age 8 years, the current age of onset of pelvic surveillance. Additionally, 4% of SLCTs were diagnosed before the age of 4 years. Ongoing data collection highlights the role of lung surveillance in the detection of early PPB and suggests that imaging-based detection and early resection may decrease the risk of advanced PPB. DICER1-related ovarian tumors were detected before age 8 years, prompting the Registry to recommend earlier initiation of ovarian surveillance with pelvic ultrasound beginning at the time of detection of a germline DICER1 P/LP variant.

7472 Estrogen Monotherapy for Testosterone Suppression in Gender Diverse Patients

Abstract Disclosure: C. Zhou: None. Q. Jones: None. S. Kokosa: None. C. Kelley: None. Background: For gender diverse individuals assigned male at birth (AMAB), gender-affirming hormone therapy consists of estrogen in combination with anti-androgen medications. Exogenous estrogen use results in the development of feminine secondary sex characteristics while indirectly decreasing testosterone. Anti-androgens such as spironolactone, leuprolide, finasteride, or dutasteride work to further suppress testosterone with successful suppression levels <50ng/dL. However, use of these agents increases the risk of adverse side effects like hyperkalemia, polyuria, and orthostatic hypotension, thus is not suitable for everyone. Anecdotally, estrogen monotherapy has been sufficient in reducing testosterone levels to goal in some patients, however at this time there are no known studies which evaluate estrogen monotherapy and suppression of testosterone. The purpose of this study is to retrospectively review estrogen formulations and dosages in patients who have adequate testosterone suppression in the absence of anti-androgen medications. Methods: The study was a retrospective chart review of adult patients ages 18- 84.99 AMAB receiving gender-affirming estrogen between 9/2020 and 12/2023 seen within an endocrine clinic at a single academic institution. Patients younger than 18, those receiving anti-androgen medications, and those with history of orchiectomy were excluded from the study. Charts were reviewed for estrogen formulations and dosages and total serum testosterone levels. Retrospective chart review will continue with additional data expected in 2024. Results: Ten patients between the ages of 19-81 met the inclusion criteria. Of these, 7 patients identified as transfeminine and 3 identified as nonbinary. The 3 patients who identified as non-binary were not included in analysis as their treatment goals may not align with full feminization or testosterone suppression (total serum testosterone <50ng/dL). Testosterone suppression from estrogen monotherapy was achieved in 100% (n=7) of the transfeminine patients when serum estradiol was >100pg/mL. In those who achieved testosterone suppression, 5 used injectable formulations (estradiol valerate 4-6mg weekly) and 2 used transdermal patches (range of estradiol from 0.2mg twice weekly to 0.3mg three times weekly). Conclusions: Estrogen monotherapy may be effective in suppressing testosterone without the need for anti-androgen medications. So far, this was noted most commonly with use of injectable estrogen formulations. A limitation of the study is the small sample size, however ongoing data collection is anticipated. Additional research evaluating estrogen monotherapy and testosterone suppression is needed and has potentially significant implications for simplified treatment protocols for transfeminine patients. Presentation: 6/2/2024

7472 Estrogen Monotherapy for Testosterone Suppression in Gender Diverse Patients

Abstract Disclosure: C. Zhou: None. Q. Jones: None. S. Kokosa: None. C. Kelley: None. Background: For gender diverse individuals assigned male at birth (AMAB), gender-affirming hormone therapy consists of estrogen in combination with anti-androgen medications. Exogenous estrogen use results in the development of feminine secondary sex characteristics while indirectly decreasing testosterone. Anti-androgens such as spironolactone, leuprolide, finasteride, or dutasteride work to further suppress testosterone with successful suppression levels <50ng/dL. However, use of these agents increases the risk of adverse side effects like hyperkalemia, polyuria, and orthostatic hypotension, thus is not suitable for everyone. Anecdotally, estrogen monotherapy has been sufficient in reducing testosterone levels to goal in some patients, however at this time there are no known studies which evaluate estrogen monotherapy and suppression of testosterone. The purpose of this study is to retrospectively review estrogen formulations and dosages in patients who have adequate testosterone suppression in the absence of anti-androgen medications. Methods: The study was a retrospective chart review of adult patients ages 18- 84.99 AMAB receiving gender-affirming estrogen between 9/2020 and 12/2023 seen within an endocrine clinic at a single academic institution. Patients younger than 18, those receiving anti-androgen medications, and those with history of orchiectomy were excluded from the study. Charts were reviewed for estrogen formulations and dosages and total serum testosterone levels. Retrospective chart review will continue with additional data expected in 2024. Results: Ten patients between the ages of 19-81 met the inclusion criteria. Of these, 7 patients identified as transfeminine and 3 identified as nonbinary. The 3 patients who identified as non-binary were not included in analysis as their treatment goals may not align with full feminization or testosterone suppression (total serum testosterone <50ng/dL). Testosterone suppression from estrogen monotherapy was achieved in 100% (n=7) of the transfeminine patients when serum estradiol was >100pg/mL. In those who achieved testosterone suppression, 5 used injectable formulations (estradiol valerate 4-6mg weekly) and 2 used transdermal patches (range of estradiol from 0.2mg twice weekly to 0.3mg three times weekly). Conclusions: Estrogen monotherapy may be effective in suppressing testosterone without the need for anti-androgen medications. So far, this was noted most commonly with use of injectable estrogen formulations. A limitation of the study is the small sample size, however ongoing data collection is anticipated. Additional research evaluating estrogen monotherapy and testosterone suppression is needed and has potentially significant implications for simplified treatment protocols for transfeminine patients. Presentation: 6/2/2024

Welcome To #Spoonietok: Understanding and Supporting Disability Expertise, Storytelling Abilities, and Collective Information Practices on Tiktok and Beyond

ABSTRACTThis poster reports developing dissertation research, exploring the individual and collective storytelling practices of people experiencing difficult to diagnose chronic pain and fatigue (CSSs) on TikTok to understand and ultimately support these embodied, creative, and collective storytelling abilities on and off‐app. Ongoing data collection and analysis using constant comparison, guided by critical disability studies sensitizing concepts, of 150 videos and their top‐20 comments, and interviews with 6 community members indicate that people with CSSs are using TikTok affordances to tell and scaffold complex micro‐stories sharing disabled expertise; creatively visualize invisible illness; use intimate, documentary cinematography; tell composite stories using skits and collapsed time; and make audio, visual, and community/collective mimetic alterations. This poster shares a pragmatic sampling approach using algorithm training, and results from visualization activities during interviews which indicate a messy overlapping landscape of what I call algorithmically mediated online health communit(ies) (AMOHCs), which have slippery boundaries, where health information is found serendipitously, and people connect across specific chronic illness categories. This dissertation‐in‐progress is developing a set of disability‐specific storytelling abilities, which interview participants indicate are transferable to off‐app settings; and upcoming codesign workshops creating storytelling support materials with community members will further distill disability storytelling support needs.

SHARE Corona Surveys: study profile

At the onset of the COVID-19 pandemic, the Survey of Health, Ageing, and Retirement in Europe (SHARE) was in a unique position to respond to the need for high quality survey data on people’s changing living situations. Implemented as two telephone interviews in the summer of 2020 and 2021 in 27 European countries and Israel, the SHARE Corona Surveys present a great advantage by their integration into the longitudinal, multidisciplinary and ex-ante harmonised design of the SHARE study. This allows researchers to trace changes from the pre-pandemic period, through the different stages of the pandemic, and the post-pandemic situation. This article lays out the research aims and how the two Corona Surveys fit in the general design of SHARE. It presents the main design features of the SHARE Corona Surveys following the survey life cycle. It starts with information on procurement, contracting, funding, ethics, and data protection and sampling, followed by information on instrument design, translations, questionnaire content and interviewer training. Last, fieldwork, panel care and data processing are described. Focused on topics of health behaviour, health care, economics and social relationships, the balanced panel sample of the two SHARE Corona Surveys comprises more than 48,000 interviews and provides valuable information on how the 50+ population coped with the COVID-19 pandemic. The experience of implementing the SHARE Corona Surveys also offers insights into use of agile project management methods for large survey infrastructures and moving towards a multi-mode design in an ongoing panel data collection project.

ThP4.8 - Establishing a Hot Gallbladder Pathway: An Optimal and Advantageous Intervention

Abstract Introduction NICE, AUGIS and Tokyo guidelines recommend early laparoscopic cholecystectomy (ELC) in symptomatic gallstone disease. We highlight our implementation of a hot gallbladder (HGB) pathway, dedicated to HGB cases in a district general hospital with a 550-bed capacity. Methods To implement a HGB service we established a formal evidence-based SOP alongside two theatre lists and six clinic slots a week. Ongoing retrospective data collection allowed us to analyse the efficacy of our interventions between January and December 2023 (n=244). Results In our cohort, biliary colic remains the commonest diagnosis (51.2%) versus acute cholecystitis (27.5%), with female predominance (80% v 20%). Prior to HGB pathway introduction in April (January–March, n=73), 13.7% underwent HGB surgery. After HGB pathway implementation (May–Dec, n=171), 28.7% had HGB surgery with a mean waiting time of 9.6 days from admission. There has additionally been an 18% decrease in patients awaiting cholecystectomy since HGB pathway implementation. Significant delays exist in obtaining an MRCP (8.48 days) and ERCP (5.87 days) when required. Complication and readmission rates were consistent with those published in literature. Conclusion Establishing a HGB pathway facilitated earlier treatment for patients and notably decreased the numbers awaiting cholecystectomy. Significant delays in obtaining MRCP/ERCP could be improved with dedicated MRCP or ERCP slots. Favourable patient outcomes alongside the almost double NHS tariff payments given to ELC compared to elective cholecystectomy, provides incentive for hospitals to implement HGB lists.

Real-World Analysis of Survival and Treatment Efficacy in Stage IIIA-N2 Non-Small Cell Lung Cancer.

Stage IIIA-N2 non-small cell lung cancer (NSCLC) poses a significant clinical challenge, with low survival rates despite advances in therapy. The lack of a standardised treatment approach complicates patient management. This study utilises real-world data from Guy's Thoracic Cancer Database to analyse patient outcomes, identify key predictors of overall survival (OS) and disease-free survival (DFS), and address the limitations of randomised controlled trials. This observational, single-centre, non-randomised study analysed 142 patients diagnosed with clinical and pathological T1/2 N2 NSCLC who received curative treatment from 2015 to 2021. Patients were categorised into three groups: Group A (30 patients) underwent surgery for clinical N2 disease, Group B (54 patients) had unsuspected N2 disease discovered during surgery, and Group C (58 patients) received radical chemoradiation or radiotherapy alone (CRT/RT) for clinical N2 disease. Data on demographics, treatment types, recurrence, and survival rates were analysed. The median OS for the cohort was 31 months, with 2-year and 5-year OS rates of 60% and 30%, respectively. Group A had a median OS of 32 months, Group B 36 months, and Group C 25 months. The median DFS was 18 months overall, with Group A at 16 months, Group B at 22 months, and Group C at 17 months. Significant predictors of OS included ECOG performance status, lymphovascular invasion, and histology. No significant differences in OS were found between treatment groups (p = 0.99). This study highlights the complexity and diversity of Stage IIIA-N2 NSCLC, with no single superior treatment strategy identified. The findings underscore the necessity for personalised treatment approaches and multidisciplinary decision-making. Future research should focus on integrating newer therapeutic modalities and conducting multi-centre trials to refine treatment strategies. Collaboration and ongoing data collection are crucial for improving personalised treatment plans and survival outcomes for Stage IIIA-N2 NSCLC patients.

Citizen science engagement reveals patterns of long-term persistence of an at risk butterfly in three metropolitan centers

Insect declines have been documented for about twenty years worldwide, and the more recent Bee Colony Collapse Disorder has brought public attention to the issue. With this in mind, the persistence and thriving of an iconic, once-extirpated butterfly, the Atala (Eumaeus atala), in three major metropolitan centers located in southeastern Florida is remarkable and deserves close examination as to how it happened. The Atala butterfly is a charismatic species mostly residing in an urban dominated landscape, and has been a prime target of citizen science engagement since the second re-discovery of the species in 1979 in coastal Miami. Three citizen science actions were instrumental in this recovery: reintroductions, year-long population monitoring afterwards, and participation in annual butterfly counts. In this research, we analyzed three different sets of monitoring data gathered by citizen volunteers to help us determine factors that may influence the Atala butterfly’s persistence. We found that the most labor- and time-demanding citizen science data allowed us to define fine scale population phenological dynamics enabling us to quantify the anecdotal biannual “crash and eruption” cycles, while the median level long-term engagement data revealed a coarse, multiple year crash and eruption population cycle. Our analyses illustrated that the contribution of on-going data collection gained through committed citizen science actions play a critical part in the species conservation strategy, allowing us to apprehend new integral knowledge of the butterfly’s biology, as well as factors influencing its population persistence and distribution.

GCT-05. UPDATED REPORT ON TREATMENT MODALITIES IN METASTATIC GERMINOMA IN CHILDREN: A MULTI-INSTITUTIONAL ANALYSIS

Abstract BACKGROUND Primary intracranial germ cell tumors (GCTs) are rare heterogeneous tumors; germinoma accounts for two-thirds of cases. While neoadjuvant chemotherapy followed by response-based reduced radiotherapy dose and field is the established approach for managing localized CNS germinomas, controversy persists regarding the treatment of primary metastatic disease. Additionally, limited research exists on the utilization of neoadjuvant chemotherapy in primary metastatic germinoma. METHODS A retrospective multi-institutional analysis was conducted to assess overall survival (OS) and event-free survival (EFS) among patients diagnosed with metastatic germinoma who were treated with various modalities. RESULTS We identified 88 patients, including 63 males and 25 females. The median age at presentation was 13.5 years. All patients, who had undergone both brain and spine MRIs, had their diagnoses confirmed through a biopsy, positive CSF cytology, and/or positive CSF tumor markers at presentation. Primary Tumor location was pineal (n=37), suprasellar (n=27), bifocal (n=14) and others (n=9). Eight patients underwent subtotal resection. Craniospinal irradiation (CSI; 21-24 Gy) was administered to 71 patients (81%), while eight patients (9%) received whole ventricular irradiation (WVI; 23.4-30 Gy). Whole brain radiation was given to four patients (5%; 24 Gy), and two patients (2%) had unknown fields. Boosts to primary and/or metastatic sites were administered in all but seven patients. Notably, thirty patients (34%) received CSI without neoadjuvant chemotherapy. At the end of therapy, 69 patients had complete response, 10 partial response and the response was unknown in six. Three patients did not receive irradiation, all died of disease progression. The median follow-up was 64 months (range 6-159 months), yielding an OS of 96.6%. Ongoing multi-institutional data collection and analysis will be presented at the meeting. CONCLUSION Our study is one of the largest studies to date in metastatic germinoma and may provide insight into the role of neoadjuvant chemotherapy with lower CSI doses.

Epidemiologic and clinical updates on viral infections in Saudi Arabia

In the past two decades, the world has witnessed devastating pandemics affecting the global healthcare infrastructure and disrupting society and the economy worldwide. Among all pathogens, viruses play a critical role that is associated with outbreaks due to their wide range of species, involvement of animal hosts, easily transmitted to humans, and increased rates of infectivity. Viral disease outbreaks threaten public health globally due to the challenges associated with controlling and eradicating them. Implementing effective viral disease control programs starts with ongoing surveillance data collection and analyses to detect infectious disease trends and patterns, which is critical for maintaining public health. Viral disease control strategies include improved hygiene and sanitation facilities, eliminating arthropod vectors, vaccinations, and quarantine. The Saudi Ministry of Health (MOH) and the Public Health Authority (also known as Weqayah) in Saudi Arabia are responsible for public health surveillance to control and prevent infectious diseases. The notifiable viral diseases based on the Saudi MOH include hepatitis diseases, viral hemorrhagic fevers, respiratory viral diseases, exanthematous viral diseases, neurological viral diseases, and conjunctivitis. Monitoring trends and detecting changes in these viral diseases is essential to provide proper interventions, evaluate the established prevention programs, and develop better prevention strategies. Therefore, this review aims to highlight the epidemiological updates of the recently reported viral infections in Saudi Arabia and to provide insights into the recent clinical treatment and prevention strategies.

A Quality Improvement Approach to Elevate Clinicians’ Use of Evidenced-Based Practice

ABSTRACT Mental and behavioral health needs amongst youth are on the rise, increasing the demand for community clinicians to treat increasingly complex cases. Extensive, complex caseloads contribute to burnout particularly when clinicians do not have the training to deliver effective treatment. Case conceptualization is a crucial component of effective treatment, as this guides intervention selection. Case conceptualization is vital within the evidence-based practice model, but this clinical skill is complex and challenging to implement effectively. A quality improvement (QI) approach was used by psychologists to develop and implement an eight-session training series with three cohorts of master’s prepared clinicians to increase their utilization of evidence-based treatments (EBTs) in clinical practice using the Project ECHO model. This QI project was accomplished via an iterative process where feedback was incorporated throughout the series. Participants’ knowledge, self-efficacy, and clinical practice were assessed pre- and post- completion of the series. Iterations in programming to improve the quality of the course are covered in detail. Participants demonstrated significant improvements in self-efficacy and reported positive changes in their clinical practice. There was no statistical change in knowledge, which was high on the pretest. Participants reported increased utilization and self-efficacy using EBTs in their clinical practice following participation in the course. Ongoing QI efforts and data collection are needed to continue to improve programming and demonstrate effectiveness of the series. Future efforts targeting specific EBT approaches for masters-prepared clinicians would be worthwhile.

Comparing Chest Tube Thoracostomy in East Tennessee Trauma Centers: A Prospective Study Highlighting Differences in Urban vs Rural Locations.

Chest tube thoracostomy (CTT) is essential for lung expansion, but protocol discrepancies exist across trauma centers. This prospective study compared CTT protocols between an urban (center 1) and rural (center 2) level 1 trauma center in East Tennessee from June to August 2023. 66 trauma patients required CTT (51 from center 1 and 15 from center 2). Diagnostic practices and post-pull chest X-rays (CXR) differed significantly. Center 1 favored CXR for diagnosis (P = 0.012), while center 2 relied more on clinical presentation (P = 0.012). Post-pull CXR was less common at center 2 (P = 0.012). Center 2 had lower Glasgow Coma Scale scores (P = 0.028), shorter tube duration (P = 0.044), and more needle thoracostomy use (P = 0.393). These findings underscore the need for regional protocols considering pre-arrival factors, hospital practices, and injury patterns. Protocol adjustments aim to improve adherence and patient outcomes, with ongoing data collection exploring factors influencing protocol evolution.

Anaplastic sarcoma of the kidney (DICER1-sarcoma of the kidney): A report from the International Pleuropulmonary Blastoma/DICER1 Registry.

Anaplastic sarcoma of the kidney (ASK) is a DICER1-related neoplasm first identified as a distinctive tumor type through the evaluation of unusual cases of putative anaplastic Wilms tumors. Subsequent case reports identified the presence of biallelic DICER1 variants as well as progression from cystic nephroma, a benign DICER1-related neoplasm. Despite increasing recognition of ASK as a distinct entity, the optimal treatment remains unclear. Individuals with known or suspected DICER1-related tumors including ASK were enrolled in the International Pleuropulmonary Blastoma/DICER1 Registry. Additionally, a comprehensive review of reported cases of ASK was undertaken, and data were aggregated for analysis with the aim to identify prognostic factors and clinical characteristics to guide decisions regarding genetic testing, treatment, and surveillance. Ten cases of ASK were identified in the Registry along with 37 previously published cases. Staging data, per Children's Oncology Group guidelines, was available for 40 patients: 13 were stage I, 12 were stage II, 10 were stage III, and five were stage IV. Outcome data were available for 37 patients. Most (38 of 46) patients received upfront chemotherapy and 14 patients received upfront radiation. Two-year event-free survival (EFS) for stage I-II ASK was 81.8% (95% confidence interval [CI]: 67.2%-99.6%), compared with 46.6% EFS (95% CI: 24.7%-87.8%) for stage III-IV (p=.07). Two-year overall survival (OS) for stage I-II ASK was 88.9% (95% CI: 75.5%-100.0%), compared with 70.0% (95% CI: 46.7%-100.0%) for stage III-IV (p=.20). Chemotherapy was associated with improved EFS and OS with hazard ratios of 0.09 (95% CI: 0.02-0.31) and 0.08 (95% CI: 0.02-0.42), respectively. ASK is a rare DICER1-related renal neoplasm. In the current report, we identify clinical and treatment-related factors associated with outcome including the importance of chemotherapy in treating ASK. Ongoing data collection and genomic analysis are indicated to optimize outcomes for children and adults with these rare tumors.