• Defines five knowledge types shaping university–city active mobility policy transfer. • Universities act primarily as advisors, with limited role in policy co-creation. • NGOs and international actors mediate transfer where municipal capacity is limited. • Policy uptake is constrained by silos, limited resources and infrastructure bias. • Calls for durable, institutionalised and reciprocal knowledge transfer mechanisms. Urban municipalities face growing pressure to ground sustainable mobility policies in evidence, yet the integration of academic insights into policymaking remains limited. This paper conducts a scoping review of knowledge transfer in university–city collaborations on active urban mobility. Using the PRISMA-ScR protocol and Dolowitz and Marsh’s policy transfer framework, 17 studies from Scopus and Web of Science databases were analysed. The review identifies five main types of knowledge transferred: analytical, methodological, experiential, institutional, and transformative. Universities contribute by translating international planning models and supporting participatory processes, but their role is predominantly advisory rather than co-creative. Municipal uptake is constrained by resource shortages, institutional silos, and infrastructure-centric priorities, while NGOs, advocacy groups, and international institutions often act as key intermediaries. Knowledge transfer occurs through workshops, study visits, EU-funded projects and urban living labs. Still, these initiatives are typically short-term and dependent on external funding, with limited evaluation of long-term impacts. The findings underscore the need for reciprocal, institutionalised, and durable mechanisms for knowledge transfer that reinforce municipal absorptive capacity and support evidence-informed transitions towards sustainable, active mobility.

This qualitative study explored the impact of comorbidities on multiple sclerosis (MS) management, integrating perspectives from individuals with lived MS experience and healthcare professionals who have direct experience in treating and managing MS. Semi-structured interviews were conducted with five individuals living with MS and five clinicians recruited through professional networks and advocacy groups. Interviews were conducted online between February 26th to March 15th, 2024. A thematic analysis was used to identify the main themes emerging from the interviews, focusing on the influence of comorbidities on MS progression, treatment decisions, and daily experiences. Comorbidities were found to significantly complicate MS management by exacerbating symptoms and influencing clinical decision-making. Individuals with lived MS experience and clinicians emphasized the need for enhanced coordination between healthcare providers and more comprehensive, interdisciplinary care models. Additionally, participants highlighted gaps in existing research on the relationship between comorbidities such as insomnia and substance use and their effects on MS outcomes. Comorbidities add a significant layer of complexity to MS management, both for individuals living with the disease and for clinicians providing care. Our findings suggest a need for integrated care models that address the unique needs of individuals with MS and comorbidities. Enhanced communication between specialists, comprehensive education for the individuals living with MS, and research that further explores the links between MS and comorbidities are critical steps toward improving outcomes. Not applicable.

Extensive critique of the evidence-based policy paradigm has led to new ways of considering the role of evidence; for example Katherine Smith suggests that "ideas" rather than evidence mediate "the relationship between research and policy". In this paper, we used Smith's typology on "ideas" to explore how this can be applied to a case of Australian policy making: a police diversion scheme for simple possession of drugs. We aimed to analyse the idea's journey into policy in one Australian jurisdiction (New South Wales) and assess its fit with the four different types of ideas outlined by Smith. Qualitative case study analysis using data from New South Wales, Australia, over the period 2018 to 2024. Multiple data sources were used: interviews with stakeholders (n = 26), documents [reports, non-governmental organization (NGO) advocacy documents], media and official reports of a Drug Summit. Each data source was searched for narration/text concerned with police diversion in addition to decriminalisation, extracted and analysed against Smith's typology. Features of 'institutionalised ideas' suggest that police diversion is not an institutionalised idea. It appears in this case to be a 'chameleonic idea' inasmuch as its characteristics change and are malleably deployed by different stakeholders with different interests. 'Flexian policy actors' (including police, government officials, advocates and researchers) are able to interpret, transform and shape the meaning of police diversion to suit their interests and commitments. Despite evidence synthesis and expert review recommending police diversion as a second-best option to decriminalisation, it was taken up into policy. We suggest this is because of its chameleonic nature, serving simultaneously at the hands of different policy actors as a roadblock to decriminalisation and as a Trojan horse for decriminalisation reform whilst also obscuring tensions between police diversion and decriminalisation. Applying Katherine Smith's typology of ideas to an Australian police diversion scheme for simple possession of drugs shows that the scheme is not an institutionalised idea but rather a chameleonic idea. Smith's typology of ideas adds another layer to policy process frameworks, enhancing analysis seeking to understand the uptake of ideas into policy.

The ASCENT Consortium was funded by the National Institutes of Health (NIH) in August 2025 with the goal of advancing palliative care (PC) research, evidence, implementation and practice to improve care of persons with serious illness and those who care for them across the lifespan. ASCENT aims to: (1) Develop and coordinate the national scientific infrastructure and community needed to advance PC research, marshalling research expertise currently distributed across research centers and leveraging the impact of that expertise via partnership and collaboration. Partners include persons who have lived experiences with serious illness personally or as caregivers, practicing clinicians, patient advocacy organizations, professional organizations, community organizations, health care systems/settings/payers across the continuum of care and other NIH-funded consortia and networks. (2) Generate new PC research knowledge and methodologies, directly by conducting projects to establish new knowledge or methods that support the work of PC scientists. (3) Foster career development and impact of the PC scientist workforce by funding career development and pilot and exploratory awards, providing access to methodologic consultations and resources such as PC research methodology and career development curricula and facilitating mentoring. (4) Disseminate PC research findings and facilitate subsequent implementation via a multi-pronged approach, including providing resource libraries, guidance documents, best practices, training, and toolkits to facilitate collaboration and co-design with health system partners and relevant organizations. This article describes the goals, organization, resources, programs and activities of the ASCENT Consortium, intending to raise awareness about ASCENT and encourage engagement with, utilization of and collaboration with ASCENT.

Hip displacement management in spinal muscular atrophy in the era of disease modifying therapies: a Delphi consensus study in the UK.

To examine gynecological cancer patients' preferred role in decision making, their experienced involvement, and their advice to patients and clinicians on preparing for and supporting SDM in clinical consultations. Two validated questionnaires, the Control Preference Scale (CPS) and CollaboRATE, were used to assess patients' preferred roles in SDM and their perceived level of involvement in medical decisions. Two open-ended questions were included to gather descriptive advice from patients, intended for both patients and clinicians. The sample for this survey was drawn from participants in a Danish patient advocacy group. In total, 117 patients completed the CPS, with 90% (n = 105) indicating a preference for an active role and 10% (n = 12) indicating a preference for a collaborative role in decision making. Mean item scores for CollaboRATE (n = 114) were 6.6 (SD=2.1) for explanation, 5.2 (SD = 2.6) for preference elicitation, and 5.5 (SD = 2.5) for integration, with 7.9% of the respondents giving a top score. The most repeated theme of advice to patients was to ask questions. Empathic communication, including active listening and the provision of clear, easy-to-understand information, was the most frequently emphasized advice to clinicians. Patients with gynecological cancer express a strong desire for involvement in SDM; however, many report that their experienced level of participation falls short of their preferences. They recommend an active role by asking targeted questions, thoroughly understanding benefits and risks of options, and remaining persistent in expressing needs. Patients emphasized the importance of empathetic communication, active listening, and the provision of clear, easy-to-understand information by clinicians. Our findings offer actionable recommendations to bridge the gap between patients' preferred role in SDM and their actual experiences across the care journey. By incorporating these recommendations, both patients and clinicians can adopt practical strategies to facilitate more personalized, patient-centered decisions aligned with individual preferences and needs.

This article examines the escalating phenomenon of book challenges and censorship in U.S. schools and public libraries, situating the issue within its historical and socio-political context. While censorship is not new in American educational and library institutions, recent years have seen an unprecedented increase in the number and intensity of book challenges, often targeting works that address race, gender, sexuality, and historically marginalized perspectives. Drawing on historical precedents—from Cold War-era purges to civil rights-era controversies—this article outlines how censorship has evolved and intensified in the current climate of political polarization and cultural conflict. Through the lens of legal cases, legislative developments, and stakeholder responses, the article explores the multifaceted nature of contemporary censorship efforts. It considers the roles of educators, librarians, parents, policymakers, and advocacy groups, examining the tension between protecting children from controversial materials and upholding the principles of intellectual freedom and educational inclusivity. Special attention is given to how these efforts disproportionately impact books featuring LGBTQ+ characters, people of color, and other marginalized groups. By analyzing current data, case studies, and policy reforms, the article provides a critical overview of the systemic and localized challenges facing school and public libraries. It also proposes potential solutions aimed at safeguarding access to diverse resources while navigating community concerns. Ultimately, the article calls for clearer policies, stronger legal protections, and sustained public advocacy to uphold libraries’ roles as inclusive, democratic spaces for learning and exploration.

ABSTRACT Two moments of worker unrest in communist Poland in June 1976 and August 1980 are used to examine the changing nature of the British labour movement and its engagement with communist Eastern Europe. Drawing on the archives of trade unions and the Labour Party, this study documents the bilateral interactions that proliferated between British labour movement organisations and state-controlled labour movement bodies in Poland during the 1970s. Leading trade unionists attended highly choreographed tours of communist Poland as guests of the state-controlled union of the corresponding industry. The same archives, alongside those of grassroots campaign groups, demonstrate how support for Eastern European dissidents emerged as an issue around which labour movement activists organised. While labour movement leaders pursued East-West dialogue, some grassroots activists exerted pressure on the former to use their relationship with the Polish state to lobby on behalf of dissidents. The paper explores the motivations behind the positions taken by various components of the British labour movement towards communist Poland, and how they changed as events unfolded. From major trade unions and the Labour Party, to British Trotskyists and grassroots labour movement activists, the paper offers a contribution to the historiographies of each.

Real-world practice patterns of eosinophilic granulomatosis with polyangiitis (EGPA) remain poorly defined. This study aimed to describe current diagnostic and therapeutic approaches across experienced European centers, identifying areas of convergence and variability to inform future standardization of care. We distributed a 44-item online survey covering diagnostic evaluation, treatment strategies, patient-reported outcome measures (PROMs), and the role of patient advocacy groups. The survey was reviewed by an expert panel and disseminated within the European EGPA Study Group. Responses were collected anonymously between April and August 2025 for statistical analysis. Fifty-four experts from six countries participated, most with long-standing experience and substantial EGPA caseloads. Multidisciplinary care and screening for cardiac and renal involvement were widely adopted; histological confirmation was reported in fewer than 25% of cases. Treatment strategies varied considerably: over half of respondents initiated anti-IL-5 therapy at diagnosis, and the combination of glucocorticoids, rituximab, and mepolizumab was the preferred induction regimen in severe disease. Corticosteroid tapering protocols differed, with most clinicians targeting withdrawal within 12 months. PROMs and disease-specific questionnaires were used inconsistently, despite broad recognition of their value. Advocacy groups were viewed as crucial, particularly for patient education and referral. This first multinational survey reveals substantial heterogeneity in real-world diagnostic and therapeutic practice, reflecting gaps in validated criteria, standardized activity measures, and treatment algorithms. These findings highlight the need for coordinated prospective research and harmonized evidence-based guidance to optimize outcomes for patients with EGPA.

ABSTRACT States like Florida place a heavy administrative burden on transgender people who want to change their names. Applicants face a dozen pages of legal forms, fingerprinting, a background check, a $400 fee, and a court hearing – requirements which do not apply to most cisgender people. County clerks and judges impose additional barriers on some applicants but not others. In this community-engaged, collaborative study with two transgender advocacy organizations, we followed 61 transgender people in Florida who started the name change process in 2022 and 2023. 31 participants completed the process. Why did some people receive name changes relatively quickly, while others discontinued the process, faced barriers, or were denied name changes? We use the racialized and gendered administrative burdens framework to explain how apparently neutral rules for preventing fraud place significant burdens and costs on multiply marginalized applicants. We use survey data, participant observation, interviews, and administrative data to find that the people most likely to encounter additional barriers in our study are unhoused people and those with prior contact with the criminal justice system. These additional barriers fell disproportionately on Black transgender women, who were then more likely to leave the process without a name change.

Zimbabwe has ratified international agreements and developed national policies, such as the National Disability Policy (2021), promoting the rights of people with disabilities (PWD). However, a significant gap persists between policy and the lived reality of PWD accessing sexual and reproductive health (SRH) services. Therefore, this study aimed to explore the lived experiences of people with sensory and physical disabilities in accessing SRH services in Bulawayo, Zimbabwe. A qualitative study was conducted in Bulawayo Metropolitan Province of Zimbabwe. Twenty participants with sensory and physical disabilities were recruited to represent diversity in gender, age, and disability type. In-depth, semi-structured phone or text message interviews depending on participant need and preference, until data saturation was reached. Data were analysed using reflexive thematic analysis, following a six-step process to ensure analytical rigour. Four themes were identified: (1) structural and infrastructural barriers; (2) financial exclusion due to multiplied costs; (3) systemic communication failures; and (4) pervasive stigma and discrimination from healthcare providers. These barriers intersect to limit SRH access and result in unmet sexual and reproductive needs, unwanted pregnancies, and avoidance of healthcare facilities. Despite a progressive policy environment, the implementation of disability-inclusive SRH services in Bulawayo is critically weak. Urgent action is required, including mandatory disability sensitivity training for all healthcare workers, investment in accessible infrastructure and assistive communication devices,enforcement of accessibility standards through regular audits,and engagement with disability advocacy groups to monitor policy compliance. These measures are essential to bridge the gap between law and practice and uphold the SRH rights of PWD.

ABSTRACT Advocacy organizations, like the United Nations Foundation, innovatively use technology to reach their target audience and spread their message. Virtual reality privides an opportunity to create a more immersive experience and connect viewers to the cause in new ways. In an experimental design, this study examines the relative effect of virtual reality versus traditional, two-dimensional videos in promoting deliberative and participatory democratic practices to further an organization’s political cause. The findings reveal that virtual reality is more effective at fostering all six democratic behaviors analyzed and at the center of virtual reality’s effectiveness is response efficacy. Virtual reality allows viewers to better visualize the difference an advocacy campaign is making in the lives of the people featured in the video. As a result, they are more willing to commit their time and energy to discuss the issue with friends and family, as well as take action to help the cause.

ABSTRACT Incarceration presents numerous complications for identity management and interpersonal connection, though some digital platforms help negotiatethese challenges. Drawing from the retrospective heuristic of Communicated Narrative Sense-Making Theory, this study explores how incarcerated men use the romantic pen-pal website LoveAPrisoner.com to negotiate their identity, resist stigma, and construct resilient narratives. Through a thematic analysis of 125 male biographies containing self-authored identity descriptions, this study revealed three strategies of narrative identity construction: omitting, disavowing, and transcending. Findings revealed LoveAPrisoner.com’s utility for stigma-free narrative construction within incarceration. Practical implications highlight pen-pal and narrative platforms as low-cost, nonclinical opportunities to support identity work, rehabilitation, and stigma resistance. Theoretically, this work underscores the importance of narrative control for incarcerated individuals and the potential consequences of policies which restrict such platforms. Findings may guide practitioners, reentry organizations, and advocacy groups in understanding barriers to stigmatized disclosure and the narrative strategies used to manage stigma.

As use cases for long-acting therapeutics expand across clinical indications, there is a critical need to ensure the inclusion of women who are pregnant or breastfeeding, infants and children-populations with a historical gap in the availability of interventions already approved for use in adults. This White Paper synthesizes insights from a special session during the 1st of July 2025 workshop of the Community of Practice for Long-Acting Therapeutics for Maternal and Paediatric Health. It was hosted by the University of Liverpool Centre of Excellence for Long-acting Therapeutics. Attendees included stakeholders drawn from clinical practice, patient advocacy groups, academia, pharmaceutical industry, regulatory agencies, product development partners, and public health organizations. Four focus groups-centered on maternal health, pediatric health, access, and regulation-addressed three key questions: (i) What are the most urgent gaps that could hinder the adoption of long-acting therapeutics for maternal and pediatric health indications? (ii) What critical actions are needed to address these gaps? (iii) What partnerships must be initiated or strengthened to enable or accelerate these actions? Actionable strategies to accelerate progress were identified. Key themes that emerged from the discussion included the need for inclusive and context-sensitive research designs, harmonized regulatory frameworks, culturally responsive implementation strategies, and sustainable funding mechanisms. Platforms for fostering interdisciplinary collaboration, amplifying diverse stakeholder voices, and promoting transparency in innovation are needed. Partnership models that support inclusive development and equitable deployment will be central to successful integration and to realize the full potential of long-acting therapeutics in advancing maternal and pediatric health.

The use of shared decision-making (SDM) in atopic dermatitis (AD) management guidelines is limited. To develop a tool for implementing the Aiming High in Eczema and Atopic Dermatitis (AHEAD) SDM approach in AD clinical practice. The international group of 7 expert dermatologists responsible for leading the development of the AHEAD approach initially drafted the tool. A global patient research study and an advisory board that included the leaders of 10 patient advocacy groups captured global patient and nonclinician considerations. The AD SDM tool provides a simple, practical tool for implementing SDM using the AHEAD approach in clinical practice. The tool enables patients to identify and rank their most troublesome AD symptoms, and clinicians to tailor treatment targets to address them. The tool will enable patients to better communicate their disease burden, increase treatment adherence, and improve continuity of care. The AD SDM tool provides a simple, practical tool for implementing SDM using the AHEAD approach. The consolidation of routine outcome measures should streamline the collection and interpretation of clinically relevant patient information. Feedback from patients and clinicians who use the tool will allow for the assessment of its value in clinical practice.

Randomized controlled trials (RCTs) remain the gold standard for evaluating medical interventions, but they often face challenges related to patient recruitment, cost, and efficiency. Real-world data (RWD) has emerged as a valuable tool to enhance trial design, improve patient identification, and support regulatory decision-making. However, integrating RWD into RCTs presents methodological, regulatory, and operational challenges. To address these issues, a think tank was convened in May 2024 at the Duke Clinical Research Institute, bringing together experts from academia, industry, healthcare systems, regulatory agencies, and patient advocacy groups. Discussions focused on three key areas: optimizing patient identification and outcome assessment, leveraging RWD for safety assessments, and using RWD in RCTs supporting regulatory approval. RWD has the potential to simplify eligibility criteria, enhance recruitment through artificial intelligence, and provide practical endpoints for evaluating treatment effects. The think tank underscored the need for collaboration across stakeholders to address challenges, such as data inconsistencies, privacy concerns, and infrastructure limitations. The event concluded with actionable recommendations, including the following: (1) standardizing RWD sources to ensure consistency and improve interoperability across healthcare systems, (2) developing regulatory frameworks that define acceptable use cases for RWD in clinical trials, (3) enhancing data quality through robust validation methodologies and real-time monitoring, (4) investing in artificial intelligence-driven patient identification tools to streamline recruitment, and (5) fostering multi-stakeholder collaboration to align expectations and share best practices. Moving forward, implementing these strategies will be critical to fully harness the potential of RWD in clinical research and improve trial efficiency.

The exclusion of Spanish-speaking participants in psychobehavioral trials among critical illness survivors limits the generalizability of evidence-based interventions. However, adapting interventions for inclusivity is challenging and few examples exist in the field for replication. To describe the cultural and linguistic adaptation of the Blueprint mobile app-based adaptive coping skills intervention to Spanish for inclusion in a multicenter trial, its usability testing, and lessons learned from the process. A multidisciplinary team of native English and Spanish speakers conducted an iterative three-step adaptation. Step 1 involved an initial cultural and linguistic adaptation of key scripted content of an existing psychobehavioral intervention for critical illness survivors ("Blueprint") to Spanish by a group that included community members, members of a Latino-serving health advocacy group, and clinicians. In Step 2, bilingual trial network members created final versions of all text and images, which were then professionally produced for an equivalent Spanish language version of the Blueprint mobile application. Step 3 involved a formal usability test of the final Spanish version among bilingual participants (n = 10) by comparing observed to target values of the Systems Usability Scale (SUS). The team successfully developed adaptations of 35 elements of audio, video, and text content. The mean SUS score of 83.1 (10.7 SD) exceeded our a priori usability target of 80. Key lessons learned included that translation software is inadequate to comprehensively incorporate cultural norms, diverse dialect representation is essential, extensive time and expense is required, and consensus must be balanced against cost and time constraints. We conducted a successful cultural and linguistic adaptation of an English language psychobehavioral intervention to a highly usable Latin American Spanish version using a methodologically rigorous process. Lessons learned from this project can assist researchers seeking to increase the number of Spanish language psychobehavioral interventions and the generalizability of future trials.

ABSTRACTGlycogen storage disease type IV (GSD IV) is an autosomal recessive disorder caused by pathogenic variants in GBE1, resulting in deficient glycogen branching enzyme (GBE) activity and formation of abnormal glycogen (“polyglucosan”). GSD IV manifests across a spectrum of clinical dimensions—including hepatic, neurologic, muscular, and cardiac involvement—which vary in severity. The early‐onset forms, historically referred to as Andersen disease, present at different stages ranging from in utero to adolescence. The adult‐onset form, referred to as adult polyglucosan body disease (APBD), typically presents in middle to late adulthood. To date, no epidemiological study of GSD IV has been performed. Understanding the global prevalence of GSD IV is critical to increase disease awareness, improve diagnostic rates, inform therapeutic development, and engage pharmaceutical companies. In collaboration with the Rare Genomes Project at the Broad Institute of MIT and Harvard and the APBD Research Foundation, this study curated variants in GBE1 and calculated prevalence across nine genetic ancestry groups. The estimated global carrier frequency of GSD IV is 1 in 243 individuals, and the global genetic prevalence is 1 in 235 784 individuals. Based on the 2024 world population, the estimated number of affected individuals with GSD IV is approximately 34 800. These estimates highlight a significant underdiagnosis of GSD IV and underscore the urgent need for increased awareness of this metabolic disorder. This model of collaboration between researchers, patient advocacy organizations, and genetic data sharing programs provides a framework for estimating the prevalence of other rare diseases in the global population.

Background:The treatment landscape for myasthenia gravis (MG) has evolved with the introduction of novel therapies. An international consensus on patient selection criteria and optimal time to initiate these therapies could improve clinical outcomes and reduce delays for likely beneficiaries.Objective:This Delphi consensus was undertaken by MG specialists from selected European countries to explore gaps in the application of national guidelines and elicit expert opinion in practice.Design:A mixed-method approach was used; qualitative and quantitative study phases were combined to explore key concepts and reach consensus.Methods:The qualitative first phase involved seven healthcare professionals (HCPs) and two patient advocacy group representatives who participated in idea generation. Findings from this phase supported the development of a Delphi survey, which was completed by 16 HCPs in two rounds. This constituted the quantitative second phase of the study. Consensus was defined as ⩾70% agreement or disagreement on a 6-point Likert scale.Results:In total, 65% of statements achieved consensus. Key findings include—HCPs highly regard international guidelines but find critical discrepancies between the “ideal” scenario and current clinical practices. Consensus was achieved on the importance of incorporating patient-related quality of life in decision-making, despite limited current methods. Consensus was obtained on steroid tapering and treatment-switch criteria based on steroid dose and duration. Consensus was also achieved on suitable patient profiles, including those with persistent symptoms, severe side effects, or needing rapid control.Conclusion:This study recognized that guidelines offer valuable direction but do not replace individualized treatment decisions. This study identified the areas of alignment and opportunities to refine patient selection criteria and treatment-switch categories, particularly to integrate novel therapy use in MG management, highlighting a path to a more patient-centric approach.

Scholarship on labour organizing in paid domestic work has shown that activists foster collective action by challenging the invisibility of domestic workers in labour policy and by centring legal recognition as a key strategy for mobilizations. Drawing from 20 months of ethnographic research in Los Angeles, I engage with this long-term goal of worker organizations to establish domestic work as a ‘service sector’ by juxtaposing it with worker narratives of their relationships and negotiations at the workplace. Bridging scholarship on devaluation and movement building in commodified domestic work with discussions on intimacy-economy nexus, this paper argues that contrary to a singular organizational narrative of distance and formalization, domestic worker organizing tackles increasing commodification and devaluation through two, often contradictory, fields of activism – first, organizational advocacy targeting formalization as well as legal recognition and second, organizational and worker narratives rooted in morality, loyalty and empathy to negotiate everyday work conditions. This paper draws on Viviana Zelizer’s discussion on hostile worlds versus connected lives in economic exchanges to highlight how the embeddedness of social relations in intimate labours like domestic work complicates collective action strategies and challenges global templates on labour standards, making the goal of professionalizing a contentious enterprise.