Follow-up Questions Research Articles

Evaluation of the Online Sport-Specific Mindfulemotions Program in a Population of Scandinavian Elite Athletes Measuring Psychological Parameters

Professional athletes are often affected by public pressure, choking under pressure, depression, anxiety, stress, or burnout. Mindfulness training seems to be a valuable tool for reducing those symptoms. Due to the general interest in online applications and the constraints of the global COVID-19 pandemic, the future of mindfulness training might be digital, and the expansion of such interventions is inevitable. Therefore, we translated and digitalised the German sports-specific mindfulness program called mindfulemotions (https://mindful-motions.de/) and evaluated it with a psychological randomised controlled trial pilot study in a population of Scandinavian elite athletes making it the first English online mindfulness-based intervention (MBI) for professional athletes. 28 athletes started the involvement, and 12 athletes finished the participation. The athletes completed several self-report questionnaires, a diary at the end of the intervention and follow-up questions after one year assessing psychological parameters before and after the mindfulness practices and website feedback. The results suggest that the web-based online program seems at the first glance feasible, comprehensible, and applicable. The nonparametric post-test analyses eventuated in an increase in mindfulness and self-compassion scores for the intervention group, but not for the control group. Overall, due to the small sample size, it is difficult to draw definitive conclusions about the feasibility of the web-based online program, but the website’s establishment and the program’s implementation were successful. This research supports the need to execute a more extensive and comprehensive investigation of the online mindfulemotion program and its potential for elite athletes.

Internet Wizard for Enhancing Open-Domain Question-Answering Chatbot Knowledge Base in Education

Chatbots have gained widespread popularity for their task automation capabilities and consistent availability in various domains, including education. However, their ability to adapt to the continuously evolving and dynamic nature of knowledge is limited. This research investigates the implementation of an internet wizard to enhance the knowledge base of an open-domain question-answering chatbot. The proposed approach leverages search engines, particularly Google, and its features, including feature snippets, knowledge graph, and organic search, in conjunction with data science and natural language models. This mechanism empowers the chatbot to dynamically access the extensive and up-to-date knowledge available on the web, enabling the provision of real time and pertinent answers to user queries sourced from web documents. A pilot study in a higher education context evaluated the chatbot’s mechanism and features, confirming its proficiency in generating responses across a broad range of educational and non-educational topics. Positive feedback and high user satisfaction validate these findings. Notably, the chatbot’s dynamic feature of retrieving related or follow-up questions from search engines significantly enhances student engagement and facilitates exploration of supplementary information beyond the curriculum.

A qualitative assessment of the eResearch Knowledge Centre’s support practices in the Human Sciences Research Council in Pretoria, South Africa

PurposeThis paper aims to assess whether the current eResearch Knowledge Centre’s (eRKC) research support practices align with researchers’ requirements for achieving their research objectives. The study’s objectives were to assess the current eRKC research support services and to determine which are adequate and which are not in supporting the Human Sciences Research Council (HSRC) researchers.Design/methodology/approachThis study uses interviews as part of the qualitative approach. The researcher chose to use interviews, as some aspects warranted further explanation during the interview. The interviews were scheduled using Zoom’s scheduling assistant. The interviews were semi-structured, guided by a flexible interview procedure and supplemented by follow-up questions, probes and comments. The research life cycle questions guided the interviews. The data obtained were coded and transcribed using MS Excel. The interview data were analysed, using NVivo, according to the themes identified in the research questions and aligned with the theory behind the study. Pre-determined codes were created in line with the six stages of the research life cycle and applied to group the data and extract meaning from each category. Interviewee responses were assigned to groups in line with the stages of the research life cycle.FindingsThe current eRKC research support services are aligned with the needs of HSRC researchers and highlight services that could be expanded or promoted more effectively to HSRC researchers. It proposes a new service, data analysis, and suggests that the eRKC could play a more prominent role in research impact, research data management and fostering collaboration with HSRC research divisions.Research limitations/implicationsThis study is limited to assessing the eRKC’s support practices at the HSRC in Pretoria, South Africa. A more comprehensive study is needed for HSRC research services, capabilities and capacity.Practical implicationsAssessment of eRKC followed a comprehensive interviewee schedule that followed Raju and Schoombee’s research life cycle model.Social implicationsZoom’s scheduling assistant may have generated Zoom fatigue and reduced productivity. Technical issues, losing time, communication gaps and distant time zones may have affected face-to-face interaction.Originality/valueeRKC research support practices are rare in South Africa and most parts of the world. This study bridges the gap between theory and practice in assessing eRKC research support practices.

Self-Reports of Sexual Violence Outside of Survey Reference Periods: Implications for Measurement.

Accurate measurement of sexual violence (SV) victimization is important for informing research, policy, and service provision. Measures such as the Sexual Experiences Survey (SES) that use behaviorally specific language and a specified reference period (e.g., since age 14, over the past 12 months) are considered best practice and have substantially improved SV estimates given that so few incidents are reported to police. However, to date, we know little about whether estimates are affected by respondents' reporting of incidents that occurred outside of the specified reference period (i.e., reference period errors). The current study explored the extent, nature, and impact on incidence estimates of reference period errors in two large, diverse samples of post-secondary students. Secondary analysis was conducted of data gathered using a follow-up date question after the Sexual Experiences Survey-Short Form Victimization. Between 8% and 68% of rape and attempted rape victims made reference period errors, with the highest proportion of errors occurring in the survey with the shortest reference period (1 month). These errors caused minor to moderate changes in time period-specific incidence estimates (i.e., excluding respondents with errors reduced estimates by up to 7%). Although including a date question does not guarantee that all time period-related errors will be identified, it can improve the accuracy of SV estimates, which is crucial for informing policy and prevention. Researchers measuring SV within specific reference periods should consider collecting dates of reported incidents as best practice.

ChatGPT for education and research: A review of benefits and risks

Generative Pre-trained Transformer (ChatGPT) is an artificial intelligence (AI) tool that can quickly generate detailed responses to prompts and follow-up questions. This emerging AI tool was launched in November 2022 by an American AI research laboratory, called OpenAI, using large language models. In this article, the benefits and risks related to the use of ChatGPT in education and research are discussed. The article argues that ChatGPT has at least five main benefits, such as creating learning assessment, enhancing pedagogical practice, offering virtual personal tutoring, creating an essay or research article outline, and brainstorming ideas. However, there are risks related to academic integrity issues, unfair learning assessment, inaccurate information, and over-reliance on AI. The article offers a set of recommendations for effective use of ChatGPT for educational and research purposes.

The Burden of Pruritus Associated With CKD: A Mixed Methods Analysis Among Patients Undergoing Dialysis

Despite its prevalence and distress to patients, chronic kidney disease-associated pruritus (CKD-aP) is poorly characterized, which may contribute to the condition's underdiagnosis and inadequate management. This study aimed to understand the symptom experience of patients with CKD-aP and the extent to which pruritus impacts their lives. Mixed methods study including one-on-one qualitative interviews and completion of the Skindex-10 Questionnaire (measuring itch-related quality of life). A total of 23 patients undergoing hemodialysis and reporting pruritus at 4 dialysis centers in the United States. Interviews followed a semistructured guide that included targeted and follow-up questions to elicit discussion of patients' symptoms of pruritus, including frequency and variability, impact on activities of daily living, and emotional and social functioning. Interviews were digitally audio-recorded. A coding dictionary was developed from transcripts to analyze themes and concepts. Participants described their itch with various terms, including "numbness," "pain," and "tingling" on their skin. Itch affected multiple areas but especially the back, usually occurred daily, and was often worse at night. For some, itching was a constant experience. Patients relieved their itch through scratching and various off-label treatments; some reported skin damage from excessive scratching and most indicated treatments provided limited relief. Pruritus considerably disrupted physical function, including sleep, daily activities, social functioning and relationships, and emotional and psychological wellbeing. All participants reported being bothered by their itching during the past week on the Skindex-10 Questionnaire. All participants were from the United States, so the findings may not be generalizable to other countries. Although symptom experience varies considerably, CKD-aP causes severe distress for many patients undergoing hemodialysis and can profoundly impair their quality of life. The results of this study show the impact of itch from patients' perspectives and highlight the need for greater awareness and better management of this condition. Patients with chronic kidney disease often experience itching, or pruritus, but its importance to patients is regularly overlooked. This study used one-on-one interviews to investigate patients' experiences of chronic kidney disease-associated pruritus and how it impacts their lives. We found that participants experienced itch on various body areas and used different words to describe their itch (eg, "numbness" and "pain"). Some reported skin damage from excessive scratching, and many used off-label treatments and other interventions (eg, rubbing alcohol and multiple showers daily), which provided limited relief. For many, itching was experienced daily and severely disrupted sleep, daily activities, interactions with others, and mental wellbeing. These findings reveal chronic kidney disease-associated pruritus severely impacts patients and highlights the need for improved management of this condition.

Ethnicity as journalism paradigm: Polarization and political parallelism of Ethiopian news in transition

In the wake of the 2018 liberalization of journalistic freedoms in Ethiopia, new waves of political unrest and a re-tightened grip on the media have emerged. A key feature in this context is the increasing reference to ethnic contrasts reflecting regional differences. While Ethiopia is a unique country in the African context in the sense of never having been colonized (with the exception of a brief period of Italian occupation), features of the contemporary media situation are also of general validity in understanding political realities in other African countries. This paper explores the concept of ‘journalism paradigms’ in that regard, with the follow-up question of how an understanding of journalism paradigms founded on ethnic boundaries might also contribute toward a more distinctly ‘African’ journalism research framework.

Using a smartphone application to capture daily work activities: a longitudinal pilot study in a farming population.

Smartphones are increasingly used to collect real-time information on time-varying exposures. We developed and deployed an application (app) to evaluate the feasibility of using smartphones to collect real-time information on intermittent agricultural activities and to characterize agricultural task variability in a longitudinal study of farmers. We recruited 19 male farmers, aged 50-60 years, to report their farming activities on 24 randomly selected days over 6 months using the Life in a Day app. Eligibility criteria include personal use of an iOS or Android smartphone and >4 h of farming activities at least two days per week. We developed a study-specific database of 350 farming tasks that were provided in the app; 152 were linked to questions that were asked when the activity ended. We report eligibility, study compliance, number of activities, duration of activities by day and task, and responses to the follow-up questions. Of the 143 farmers we reached out to for this study, 16 were not reached by phone or refused to answer eligibility questions, 69 were ineligible (limited smartphone use and/or farming time), 58 met study criteria, and 19 agreed to participate. Refusals were mostly related to uneasiness with the app and/or time commitment (32 of 39). Participation declined gradually over time, with 11 farmers reporting activities through the 24-week study period. We obtained data on 279 days (median 554 min/day; median 18 days per farmer) and 1,321 activities (median 61 min/activity; median 3 activities per day per farmer). The activities were predominantly related to animals (36%), transportation (12%), and equipment (10%). Planting crops and yard work had the longest median durations; short-duration tasks included fueling trucks, collecting/storing eggs, and tree work. Time period-specific variability was observed; for example, crop-related activities were reported for an average of 204 min/day during planting but only 28 min/day during pre-planting and 110 min/day during the growing period. We obtained additional information for 485 (37%) activities; the most frequently asked questions were related to "feed animals" (231 activities) and "operate fuel-powered vehicle (transportation)" (120 activities). Our study demonstrated feasibility and good compliance in collecting longitudinal activity data over 6 months using smartphones in a relatively homogeneous population of farmers. We captured most of the farming day and observed substantial heterogeneity in activities, highlighting the need for individual activity data when characterizing exposure in farmers. We also identified several areas for improvement. In addition, future evaluations should include more diverse populations.

PA08 Do parents and carers of children with eczema understand topical steroid potency? Results of a patient survey

Abstract Dermatologists consider topical corticosteroids (TCS) to be the first-line active treatment for most inflammatory skin disorders, including eczema. Well-known adverse effects can usually be avoided by careful prescribing. However, widespread public antipathy to TCS, sometimes amounting to steroid avoidance and phobia, can impair patient care. This fear is largely independent of steroid potency, even though there can be up to a 100-fold difference between the mildest and the most potent products. National Institute for Health and Care Excellence guidelines refer to the World Health Organization’s four-level grading system (mild, moderate, potent and very potent), but information about potency is never found on TCS packaging and rarely in patient information leaflets (Haider Z, Proctor A, Moss C. Potency of topical steroids should be clearly labelled on all packaging. Br J Dermatol 2023; 188:427–8). We surveyed parents and carers to investigate their knowledge and understanding of steroid potency. A SurveyMonkey® questionnaire was promoted by the National Eczema Society on social media, and by Eczema Outreach Support in a newsletter to supporters in January 2023. Of 984 responses received, 25% were from parents or carers of children with eczema. Of these, 97% knew that TCS could have different strengths (potencies), but 44% did not know how many different grades there were, with only 20% correctly answering four. Despite this, 77% of respondents felt ‘somewhat confident’ or ‘very confident’ that they knew how strong their cream was, but of those who were ‘very confident’, 29% did not know how many potency grades there were. Follow-up questions revealed that of those who had used these specific TCS, 93% knew that hydrocortisone is mild, but only 48% correctly identified Fucidin H as mild. Only 54% correctly identified DermovateTM as very potent. When asked ‘Where would you look to find out how strong your steroid creams and ointments are?’ most (69%) answered ‘on the packaging’. Ninety-seven per cent were in favour of clear potency labelling on all steroid creams and ointments. Sixty-two respondents provided free-text comments that were analysed thematically: 51% expressed confusion about TCS or a need for more information; 18% complained that general practitioners were not sufficiently knowledgeable; 20% voiced concerns about TCS, some vehemently, and most citing ‘topical steroid withdrawal’; 11% were positive about TCS and the information provided, two of whom used the ‘Aron regimen’. Several responses indicated confusion between percentage concentration (stated on the tube) and potency. These findings confirm the clinical impressions that parents of children with eczema have limited understanding of potency and need clearer information on the tube and packaging.

A guide to sharing open healthcare data under the General Data Protection Regulation

Sharing healthcare data is increasingly essential for developing data-driven improvements in patient care at the Intensive Care Unit (ICU). However, it is also very challenging under the strict privacy legislation of the European Union (EU). Therefore, we explored four successful open ICU healthcare databases to determine how open healthcare data can be shared appropriately in the EU. A questionnaire was constructed based on the Delphi method. Then, follow-up questions were discussed with experts from the four databases. These experts encountered similar challenges and regarded ethical and legal aspects to be the most challenging. Based on the approaches of the databases, expert opinion, and literature research, we outline four distinct approaches to openly sharing healthcare data, each with varying implications regarding data security, ease of use, sustainability, and implementability. Ultimately, we formulate seven recommendations for sharing open healthcare data to guide future initiatives in sharing open healthcare data to improve patient care and advance healthcare.

Can online discussions benefit students’ learning in online courses? Evidence From teaching introduction to microeconomics

In this research, we investigated whether online discussions can significantly benefit students’ learning in online courses. We designed an experiment by dividing 129 students who enrolled in four fully online “Introduction to Microeconomics” courses taught by the same instructor into four groups (one control group and three experimental groups). We adopted econometric analysis to investigate the issue. Our empirical evidence demonstrated that online discussions can significantly benefit students’ exam performance in online courses only when instructors are effectively engaged in discussions. Instructors who do not effectively engage in online discussions had a less than significant effect on students’ exam performance even when peer-responses were required. On the other hand, the effect was positive and significant when instructors effectively engaged but the level of significance was weak (at the 10% level of significance) and began with a later exam (Exam 4, out of a total of five exams) rather than the first exam or earlier. Detailed discussions about these phenomena are offered as are several possible reasons for these findings. We recommend significantly increasing weights for online discussions in the final course grade and including exam questions that directly reflect online discussion questions (including serious participation in discussions and requiring that students provide answers to instructors’ follow-up questions). These additions would significantly benefit students’ learning in online courses.

P-572 The occupational challenges reported by UK embryologists: stress, fatigue, and burnout

Abstract Study question To determine the prevalence of occupational stress, fatigue, and burnout reported by UK embryologists and their perceived impact of work conditions on wellbeing. Summary answer The surveyed UK embryologists reported low somatic symptom severity and moderate perceived stress, but high levels of burnout and overall stressful working conditions. What is known already High levels of occupational stress, fatigue, burnout, and occupational health issues have been reported among embryologists in the Spanish, US, and international surveys. These issues were associated with embryologist’s occupational challenges and work conditions. Most (58.3%) of the previous UK survey participants reported work-related health issues, including stress/mental health problems (27.8%). However, that study did not evaluate stress and burnout utilizing the same standardized measures as recent US and international surveys, both of which identified considerably higher burnout than the Spanish survey. The present study will address this gap and identify issues that concern UK embryologists using our survey toolkit. Study design, size, duration A cross-sectional, mixed methods web-based survey was sent via email to 253 of an estimated ∼400 UK embryologists working in Human Fertilisation and Embryology Authority (HFEA)-licensed UK ART/IVF clinics and private practices in January 2023. Participants self-reported their stress levels, fatigue, burnout, and work conditions (cryopreservation, technology, overtime work, doing double-work, employer understanding, etc.). Participants/materials, setting, methods Proportions across the Maslach Burnout Inventory-General Survey (MBI-GS), Perceived Stress Scale (PSS), Patient Health Questionnaire (PHQ-15), and a single-item work unit grade (A–F), and customized occupational and sociodemographic questionnaires were calculated using descriptive statistics. Welch’s t-test and ANOVA to compare PSS and PHQ-15 scores between the groups categorized by occupational questions, and Pearson’s correlation coefficients and multivariate analysis to cross-correlate statistically significant and biologically important parameters will be utilized once the survey is closed. Main results and the role of chance To date, of 253 embryologists, 104 (41%) completed the survey (mean age 34.3 years, 88% female); 77% worked in private/for-profit, 17% government, 5% corporate, and 1% academic settings. A total of 60% of the respondents reported symptoms of burnout on the MBI exhaustion dimension and 42% on MBI cynicism, and 68% of them reported being unable to cope with their workload. The PSS showed moderate perceived stress, and the PHQ-15 showed low somatic symptom severity, with 38% reporting fatigue. Additionally, 2% experienced constant, 13% high, 33% moderate, 37% mild, and 15% no anxiety. Moreover, 53% reported the current cryopreservation processes caused anxiety, 63% reported technology would ease the burden on the lab staff, and 74% reported technology would lessen their stress as an embryologist. Regarding their workplace environment and culture, 80% reported working overtime, 57% found themselves doing double work due to a lack of technology integrations and analog record, and 80% felt their employers did not understand their occupational challenges. When asked to rate their work unit safety, 38% of embryologists gave their laboratories grade of A (excellent), 50% B (very good), 10% C (acceptable), 3% D (poor), and 0% F (failing). Limitations, reasons for caution This study is limited by the self-reporting nature of the data collection via on-line surveys, which precluded interviewing or follow-up questions of embryologists. Wider implications of the findings Overall, work-related health issues and occupational challenges reported by UK embryologists align with results from recent surveys and could be addressed by organizational enhancements and technology improvements. Lower levels of job-specific stress and burnout among them compared to their colleagues might be due to HFEA-provided structure/certainty to their professional responsibilities. Trial registration number NCT05708963

Resistance to revolutionary love: The struggle to decolonise the republic

This conversation with French-Algerian thinker and activist Houria Bouteldja focuses on her book Whites, Jews, and Us: Toward a Politics of Revolutionary Love. By zooming in on contemporary debates around racism and decolonization in France, this interview focuses on questions of how gender and masculinity, sexuality, class, and race form political relationships within the modern nation-state. In particular, it asks follow-up questions to Bouteldja's epistemology in the chapter “We, Indigenous Women,” the chapter that explicitly focuses on women, gender, and sexuality. And while gender and sexuality are always also inherently public, we follow up on tracing how her book, Les indigènes de la république (the movement of which she was the spokesperson from 2005 to 2020), and she herself have been received in French public debate, including in academia, politics and the media. Within the latter power fields, we address the role of women of color intellectuals and the challenges they pose to current debates and “moral panics” through the optics of popular decolonial movements. Eventually, a conversation unfolds where an ostensible “(too) liberal academia” has been marked by contemporary accusations of “Islamogauchisme” in a wider discourse that portrays Europe as being “in crisis” and what that means for the decolonization of Europe.

Preferences for climate change policies: the role of co-benefits

ABSTRACT Policies mitigating climate change provide a global public good but are also likely to imply local co-benefits where implemented. This may affect citizens’ preferences for what policy to implement as well as where to implement it. This aspect remains understudied despite its relevance for international climate negotiations, national policies, and the development of voluntary carbon credit markets. The results of a discrete choice experiment show that citizens in five countries (Denmark, France, Germany, Italy and Spain) have quite similar mean willingness to pay for carbon emission reductions and agree on the ranking of policies targeting different sectors. Specifically, policies targeting renewable energy use, are preferred over policies targeting industrial energy efficiency or carbon sequestration and biomass production in forests. Applying follow-up questions shows that concerns over co-benefits, notably air pollution, is linked to preferences for implementation in the home country. In the absence of co-benefits, citizens are indifferent or prefer policies implemented in other countries. Key policy highlights Citizens in five European countries share preferences for climate change mitigation policies, though significant intra-national heterogeneity in preferences exist Policies targeting increased use of renewables are preferred over policies targeting improved energy efficiency in the industry. Citizens express preferences for policies implemented in their own country. This is associated with their perception of co-benefits. In particular, consideration of reduced air pollution as a side effect of investing in renewable energy and in energy efficiency in the industry are important determinants of preferences for national implementation of policies. Preferences for national co-benefits may both enhance policy acceptance and reduce willingness to support policies implemented in other countries. The latter aspect may reduce cost-effectiveness across countries but ease effort-sharing negotiations.

Influence of (Non) Observance of Maxims on Evasion in Malaysian Parliamentary Question Time

This content-analytic study examines the influence of (non) observance of maxims in the production of evasive responses in Malaysian Parliamentary Question Time. The analysis was based on the theories of Cooperative Principle (Grice, 1975) and Clayman’s Framework of Resistance (2001; 2012). Two strategies of (non) observance of maxims were found to produce evasive responses namely, violating and opting out. Ministers and deputy ministers were found to frequently shift tasks required by providing assurances to the questioners and audience. They also acknowledged the issues raised without addressing them. Further, they talked about prior actions taken to address current issues and made a reference to another party to relieve themselves from bearing the responsibility alone which led to the violation of maxims that subsequently produced evasive responses. Evasive responses also occurred when ministers and deputy ministers disregarded the questions altogether, thus opting out of the Cooperative Principle. Despite being evasive, equivocal responses were deemed cooperative as no instances of follow-up questions were recorded.

Frailty: A Strong Impact on Lung Transplant Outcomes?

Frailty: A Strong Impact on Lung Transplant Outcomes?

International Perspectives on Modifications to the Surgical Safety Checklist

Modification of the World Health Organization's Surgical Safety Checklist (SSC) is a critical component of its implementation. To facilitate the SSC's use, it is important to know how surgical teams modify their SSCs, their reasons for making modifications, and the opportunities and challenges teams face in SSC tailoring. To study SSC modifications in high-income hospital settings in 5 countries: Australia, Canada, New Zealand, the United States, and the United Kingdom. This qualitative study used semistructured interviews based on the survey used in the quantitative study. Each interviewee was asked a core set of questions and various follow-up questions based on their survey responses. Interviews were conducted from July 2019 to February 2020 in person and online using teleconferencing software. Surgeons, anesthesiologists, nurses, and hospital administrators from the 5 countries were recruited through a survey and snowball sampling. Interviewees' attitudes and perceptions on SSC modifications and their perceived impact on operating rooms. A total of 51 surgical team members and hospital administrators from the 5 countries were interviewed (37 [75%] with >10 years of service; 28 [55%] women). There were 15 (29%) surgeons, 13 (26%) nurses, 15 (29%) anesthesiologists, and 8 (16%) health administrators. Five themes emerged concerning the awareness and involvement in SSC modifications; reasons for modifications; types of modifications; the outcomes of modifications; and perceived barriers to SSC modifications. Based on the interviews, some SSCs may go many years without being revisited or modified. SSCs are modified to ensure they address local issues and standards of practice and that they are fit for purpose. Modifications are also made following adverse events to reduce the risk of reoccurrence. Interviewees described adding, moving, and removing elements from their SSCs, which increased their sense of ownership in their SSC and participation in its performance. Some barriers to modification included leadership and the SSC's inclusion in hospitals' electronic medical record. In this qualitative study of surgical team members and administrators, interviewees described addressing contemporary surgical issues through various SSC modifications. The process of SSC modification may improve team cohesion and buy-in in addition to providing opportunities for teams to improve patient safety.

Disability-Specific Sporting Competitions and the UN CRPD: Segregation as Inclusion?

Since the UN Convention on the Rights of Persons with Disabilities (CRPD) was created, segregation of persons with disabilities is no longer allowed. Separate schools, sheltered workshops, and isolated social care homes impede inclusion and must be banned. Sport is a remarkable exception to this general principle. The CRPD explicitly states that persons with disabilities should have the opportunity to organize, develop, and participate in disability-specific sporting activities. This contribution—focusing on the Paralympics and Special Olympics—examines why the CRPD allows and encourages disability-specific sporting competitions, despite (or perhaps due to) its radical choice for inclusion. Beyond that, this contribution asks the obvious follow-up question: if disability-specific competitions are allowed, how can the criteria for participation be determined in a manner consistent with the CRPD? The CRPD opposes a medical approach to disability, yet that approach is often used in selection criteria. Although this contribution primarily focuses on sports, the impact is wider: it raises questions on inclusion and how to assess disability.

REPRESENTASI MEDIA DAKWAH MODERN: STUDI KASUS PADA PLATFORM TWITTER

Twitter is the most widely used social media platform by millennials in the digital era. One of the positive things that can be utilized is the potential of Twitter as a medium of da'wah, especially for the millennial generation. With the advantage of being able to upload writing in a relatively short time so that it can reach all groups. One of the most famous preachers today, Husen Ja'far, who uses his Twitter account for da'wah media with 713 thousand followers. This study aims to conduct a semiotic analysis of Husein Ja'far's account comments and how Twitter is used as a representation of da'wah media in the digital era. This study uses Charles Sanders Pierce's semiotic analysis model. The sampling technique in this study used simple random sampling. Data collection techniques used by researchers are document analysis and literature study. This study analyzes the responses of Twitter netizens regarding da'wah content uploaded by the @Husen_Jafar account. The results of the study show that there are three signs that form the basis of the researcher's analysis on Husen Ja'far's account. The first is a sign of the many comments that appear in every upload of Husen Ja'far, although the number varies. The second netizen expressed his gratitude for the knowledge that had been shared in Husein Ja'far's upload. And finally, there is a follow-up question regarding Husein Ja'far's explanation of a religious issue.

0594 Hybrid Decentralized Recruitment Approach to a Rare Disease Registry for Pediatric Patients With Narcolepsy: The CATNAP® Registry

Abstract Introduction Limited information is available on the natural history, presentation, and management of pediatric narcolepsy. CATNAP® is a retrospective and prospective, longitudinal, multicenter, web-based pediatric narcolepsy registry (NCT04899947). The primary objectives are to improve understanding of the natural history of pediatric narcolepsy, characterize symptom presentation and diagnosis, and understand treatment practices and outcomes. After registry initiation, an innovative decentralized approach was added to adapt to the post-COVID-19 environment and reach additional participants via social media. Methods Eligible children/adolescents (< 18 years) with confirmed narcolepsy were recruited. Participants, caregivers, and clinicians, leveraging web-based portals, answered questions on sociodemographic characteristics; diagnostic, medical, and treatment history; comorbidities; and disease progression. Participants continue to answer follow-up questions annually until they reach 25 years of age or decline to participate. Since registry initiation in September 2020, 17 sites have been activated, including a virtual site launched in August 2022. Hybrid decentralized recruitment required a new web interface, Institutional Review Board submissions, and 7-week social media campaign (press release, 5 targeted posts) to accompany the virtual site launch. Results A total of 126 participants have been enrolled (signed consent), including 75 participants at 16 physical sites over the first 2 years and 51 participants at the virtual site over 10.6 weeks. Rates of engagement (eg, clicks, likes, and shares) for Instagram (3.2%), LinkedIn (7.2%), and Twitter (2.4%) exceeded “good engagement rate” benchmarks for these platforms. Although the engagement rate for Facebook was below benchmarks (< 2%), the absolute number of “clicks” (29) was the largest among social media platforms in the campaign. Conclusion A hybrid recruitment approach for CATNAP demonstrates incorporation of patient-driven considerations into clinical trial design and increases access to future real-world data registries and studies. Decentralization likely increases enrollment and may enable representation from more diverse regions and populations. This is especially important for rare diseases. The CATNAP Registry provides valuable information on the experience and management of pediatric narcolepsy, which will benefit patients and caregivers, inform clinical decision-making, and potentially contribute to development of new treatments. This successful implementation of a hybrid approach with physical and virtual sites could inform design of future registries. Support (if any) Jazz Pharmaceuticals