Expert Community Research Articles

PROBLEMS AND RISKS OF DECENTRALIZATION OF POWER IN UKRAINE: REVIEW OF EXPERT OPINION

Considered opinions of the expert community of Ukraine regarding threats and risks on the way to implementing the reform of power decentralization in Ukraine. The decentralization of power and the formation of united territorial communities as the main subjects of local self-government, as well as the creation of prerequisites for their self-sufficient and economically efficient development, are unanimously recognized by domestic experts as the main vector of the modern development of the state-building system of Ukraine. Decentralization of power should become an effective tool for socio-economic development of territories, thanks to the efforts of independence of local self-government and increasing its activity, strengthening of local democracy. The inevitability of problems and risks of decentralization of power, which are objectively determined by the conditions affecting decentralization in Ukraine, is asserted. Selected problems and risks of a political, economic, socio-demographic, ecological, spatial and psychological nature. Experts separately point out the risk of using the decentralization policy for further disintegration of Ukraine in conditions of armed aggression by the Russian Federation. At the same time, the policy of decentralization in Ukraine can become an attractive alternative to Russian versions of the federalization of Ukraine.

Государственное управление процессами противодействия коррупции: теоретико-методологические и политико-правовые аспекты

The authors explore current problems of public administration of processes related to combating corruption, focusing on its theoretical, methodological, political and legal aspects. This is due to the fact that the society has formed a demand to ensure resolute counteraction to corruption, the spread of which creates an existential threat to Russian society. Therefore, it is necessary to combine the efforts of the government, business and civil society, including the scientific and expert community, aimed at solving this problem. Special attention is paid to the search and use of adequate theoretical and methodological approaches to the corruption problem, which has a complex nature, and the development of effective anti-corruption technologies. In this regard, a critical analysis was carried out and the inconsistency of biologizing and sociologizing interpretations of corruption, recognition of its “eternal” nature, etc., was shown, which leads to the development and use of ineffective anticorruption tools. On the contrary, heuristic possibilities of dialectical, concrete-historical and interdisciplinary approaches to the development of anti-corruption system are postulated. It is concluded that the deep origins, causes and factors that generate corruption in modern Russia are rooted in the model of social structure chosen in the 1990s. The necessity of developing and implementing an updated state anti-corruption policy in the context of ongoing and expected socio-economic and political transformations is substantiated. It is shown that the updated anti-corruption policy should be implemented in dialectical unity with the state policy on the preservation and strengthening of traditional spiritual and moral values.

Professional Perspectives on Children's Health Assets: A Delphi Study.

This study aims to describe a local community expert's perspective on the identification of and access to children's health assets and to gather proposals to promote children's health and well-being within their community. The health asset approach is essential for health promotion, and there is evidence of its benefits to individuals' or communities' health when this approach is observed. Children's health assets are gaining increasing interest, but the literature that captures the perception of professionals working with children is scarce. Qualitative research designed with Delphi methodology was carried out with the participation of 25 professionals working in a neighbourhood with children and families. The participants stated that this neighbourhood was a good environment for the healthy and happy growth of children but pointed out that there were inequities. They emphasised the importance of economic and physical security and feeling loved. The absolute best aspects of the neighbourhood according to these experts were its support networks, mutual help, educational and health services, and green spaces, and the most deficient aspects were the possibility of a hopeful future and emotional support within the family unit. Poverty and/or the scarcity of economic resources were identified as the main barriers to accessing health assets. Special difficulties in access to health for migrant and Roma children were also identified. The panel of experts made concrete action proposals. It was recommended to support resources and services that already exist in their community. The experts prioritised work with families, education, working in conjunction with vulnerable groups, community participation, and networking.

Trust in and Building of Sustainable Local Health and Well-Being Programs in the United States

The U.S. healthcare system is by far the most expensive per capita in the world and does not deliver the best outcomes. The literature shows that the U.S. population is distressed about what it is paying for and is especially distressed about people and companies that it perceives as sacrificing the public good for personal profit. Nevertheless, studies show high levels of trust in nurses, pharmacists, personal physicians, fire and security officers, engineers, and other practitioners who provide services at the local scale. Artificial intelligence (AI) poses an opportunity to reduce healthcare costs, yet it concerns the public because its misuse may violate personal boundaries, spread inaccurate data, and lead to other undesirable outcomes. The literature illustrates the benefits of cooperative relationships between community groups, local governments, and experts using new AI tools in support of local public health and well-being programs. One important example is preventing and reducing the consequences of acute hazard events. Overall, this review makes a case that focusing on the community scale represents an opportunity to improve health and well-being outcomes by establishing trusted and sustainable relationships.

Public Health Accountability in Action: The King County Pandemic and Racism Community Advisory Group.

After a tumultuous 3 years of pandemic-, political-, and race-related unrest in the United States, the public is demanding accountability to communities of color (defined here as American Indian/Alaska Native, Asian, Black, Native Hawaiian/Pacific Islander, and Hispanic people) to rectify historic and contemporary injustices that perpetuate health inequities and threaten public health. Structural racism pervades all major societal systems and exposes people to detrimental social determinants of health. Disrupting structural racism within public health systems is essential to advancing health equity and requires organized partnerships between health departments and community leaders. As those who are most affected by structural racism, communities of color are the experts in knowing its impacts. This case study describes the King County Pandemic and Racism Community Advisory Group (PARCAG) and its use of an innovative accountability tool. The tool facilitated institutional transparency and accountability in the adoption of community recommendations. PARCAG was influential in shaping Public Health-Seattle & King County's COVID-19 and antiracism work, with 66 of 75 (88%) recommendations adopted partially or fully. For example, a fully adopted recommendation in May 2020 was to report King County COVID-19 case data by race and ethnicity, and a partially adopted recommendation was to translate COVID-19 information into additional languages. PARCAG members were recruited from a 2019 advisory board on Census 2020 and were adept at shifting to advising on COVID-19 and equitable practices and policies. Organizations that have made declarations that racism is a public health crisis should center the experiences, expertise, and leadership of communities of color in accountable ways when developing and implementing strategies to disrupt and repair the effects of structural racism and efforts to promote and protect public health.

The importance of consensus science to managing phosphorus in the environment: SERA‐17 and the legacy of Andrew Sharpley

AbstractPhosphorus (P) loss from agricultural systems to surface waters, and ultimately, eutrophication, presents a wicked problem requiring transdisciplinary solutions. The mission of SERA‐17 (Southern Extension and Research Advisory Information Exchange Group‐17) has been to address this problem by developing “Innovative Solutions to Minimize Phosphorus Losses from Agriculture.” Over the course of his career, Dr. Andrew Sharpley demonstrated a rare ability to collaboratively achieve consensus around issues related to the science and management of P. The SERA‐17 organization served as the central community of experts and stakeholders where that consensus was built and applied. The consensus‐based approach, demonstrated by Sharpley and at the core of the SERA‐17 organization, was routinely applied to key areas of P science to produce applied outcomes that have been readily adopted: advance foundational science to resolve knowledge gaps and to promote innovation; promote consistency in methods to facilitate comprehensive investigations and conclusions across a diversity of systems; engage diverse stakeholders to prioritize research, and ultimately, ensure that outcomes reflect a plurality of perspectives; and deliver pragmatic solutions that reflect the best information available at a particular time. We review the history of SERA‐17 in delivering new science and management recommendations for P, with an eye to elucidating Sharpley's role and legacy in this process.

Before amplification: the role of experts in the dynamics of the social attenuation and amplification of risk

In this article, we use system/network theory together with the social amplification of risk framework (SARF) to show how expert actors over time and across multiple events can contribute to social risk amplification and attenuation. The framework and the theory, in particular the concepts of risk emplacement and displacement, are employed in the analysis of an illustrative case related to the use of the feed additive, narasin, and provide explanations of how risks are part of continuously ongoing and dynamic social processes. By emphasizing the role of experts in such developments, connecting what happens in expert communities with the processing of risks and effects on the outside, the analysis shows the larger context within which social risk attenuation and amplification happen. Showing the value of integrating different theories and perspectives, this article lays the foundations for further studies of risk amplification and attenuation dynamics. Based on the results of the analysis, we indicate opportunities to update and further develop the SARF. We also present some implications for public policy and risk management practices including addressing the positive contributions of risk amplification and how this relates to adaptive risk management approaches.

Iranian classical dance as a subject for empirical research: Anelusive genre.

Dance has entered mainstream empirical research: dance as an experimental stimulus, and dancers as movement experts. Informed by several sources, including primary sources (original, historical documents, and oral reports, such as interviews with practitioners and academic scholars of Iranian dance genres) and secondary sources (research literature), we describe what we label "Iranian classical dance" within this paper as an important resource for empirical research, not only in humanities scholarship but also, and importantly, for empirical aesthetics, emotion psychology, cross-cultural psychology, and affective neuroscience. For this purpose, we (1) describe the aesthetics, characteristics, and history of Iranian classical dance; (2) outline issues of definition and systematization; and (3) give an overview of the cultural complexities and sociopolitical issues regarding Iranian classical dance in the past 40 years, which have shaped its current form. After the political revolution of 1979 (Iranian solar calendar year: 1358), dance in Iran-both as everyday practice and as a cultural heritage-was first forbidden, and now remains heavily restricted. International, interdisciplinary research teams can contribute to safeguarding Iranian classical dance in the future by firmly enshrining it into empirical research on human dance. We outline empirical research perspectives on Iranian classical dance, dataset resources, and expert communities.

Тенденции в перераспределении муниципальных полномочий в области градостроительной деятельности

Changes in federal legislation in 2014 provided the state authorities of the Russian Federation with the opportunity to redistribute municipal powers in the field of urban planning. To date, more than half of the regions have already taken advantage of the granted right, however, both in the scientific literature and in the expert community there are a small number of works devoted to the analysis and evaluation of this issue. The article presents the results of a study of the practices of redistribution of powers between the state authorities of the Russian Federation and local governments in the field of urban planning. As a methodology, a combination of verification methods and elements of system-logical analysis is used to describe and analyse the main characteristics and typical models of the redistribution of municipal powers in the field of urban planning, as well as correlation analysis to study the possible motives for such redistribution. The results confirm the lack of system and discretion of the state authorities in choosing the number of municipalities and municipal powers for redistribution. At the same time, the motive for redistribution, apparently, is their desire to have a greater influence on the administrative procedures associated with the implementation of housing building. All this opens up prospects for further research on this issue and the search for guidelines for meaningful control over the adopted laws on redistribution and rethinking the role of the state authorities of the Russian Federation in the field of urban planning and development.

Multimodality Cardiac Imaging and the Imaging Workforce in the United States: Diversity, Disparities, and Future Directions.

Innovations in cardiac imaging have fundamentally advanced the understanding and treatment of cardiovascular disease. These advances in noninvasive cardiac imaging have also expanded the role of the cardiac imager and dramatically increased the demand for imagers who are cross-trained in multiple modalities. However, we hypothesize that there is significant variation in the availability of cardiac imaging expertise and a disparity in the adoption of advanced imaging technologies across the United States. To evaluate this, we have brought together the leaders of cardiovascular imaging societies, imaging trainees, as well as collaborated with national imaging accreditation commissions and imaging certification boards to assess the state of cardiac imaging and the diversity of the imaging workforce in the United States. Aggregate data confirm the presence of critical gaps, such as limited access to imaging and imaging expertise in rural communities, as well as disparities in the imaging workforce, notably among women and underrepresented minorities. Based on these results, we have proposed solutions to promote and maintain a robust and diverse community of cardiac imagers and improve equity and accessibility for cardiac imaging technologies.

Comparative Study of Literacy Enhancement on Volcanic Disaster Reduction for the Residents and Visitors in Mt. Ontakesan and Other Volcanic Areas

After the eruption of Mt. Ontakesan Volcano in 2014, Ontakesan Volcano Laboratory, Nagoya University was established in 2017 to keep and develop the face-to-face relationship between the local community and volcano experts. In 2018, the Ontakesan Volcano Meister System also started to undertake activities for volcanic disaster management and promotion of the regional economy. Additionally, two visitor centers opened in Kiso Town (at the foot of Mt. Ontakesan) and Otaki Village (at the entrance of the trail to the summit) in 2022. We compared these activities in the Ontakesan area with other volcanic areas (Usuzan, Bandaisan, Hakoneyama, Fujisan, Asosan, Unzendake, and Sakurajima) from the perspective of literacy enhancement on volcanic disaster management. We made an interview survey of the organizations/facilities responsible for volcanic disaster prevention education in these volcano areas to evaluate the activity of the Ontakesan Voclano Meisters. We considered common and specific issues among them to clarify the characteristics of literacy enhancement for volcanic disaster reduction in the Ontakesan area. In all the organizations that we surveyed, there is a common emphasis on the education for children to transfer disaster memories to the next generation and to raise their awareness of disaster prevention. Though the Ontakesan Volcano Meisters have less interaction with the local residents than other areas, they exceed in the enlightenment for climbers and have made efforts to raise the safety awareness of climbers on site since their establishment.

People living with Alzheimer's disease: Understanding the emerging phenomenon of retrograde plunge with the story theory-An inquiry method.

This study aims to (1) introduce the emergent concept of the retrograde plunge experienced by people living with Alzheimer's disease and (2) illustrate how nurses can accompany those experiencing this phenomenon, as well as their family and formal carers, using the seven-phase inquiry process proposed by Smith and Liehr. Discursive paper. After describing the phenomenon and the Story Theory, the 7-phase Inquiry Process presents the fictional story of Mrs. Lurie, a nursing home resident. Story theory allows nurses to accompany Mrs. Lurie. The emergent concept of retrograde plunge is explained. Different tools such as genograms, story paths and eco-maps are presented. This discussion demonstrates how some perspectives can contribute to a better description of the retrograde plunge phenomenon. The narrative care approach can help give voices to people experiencing retrograde phenomena. The adoption of a perspective that considers embodied language could help to better understand the needs of a person. There is a lack of consistency and uniformity regarding the understanding of the retrograde phenomenon. This impacts the quality of care for people and the scientific knowledge, research and education of healthcare professionals. This issue should be addressed in future studies. This article shows how story theory helps nurses accompany those facing a retrograde plunge phenomenon, helps them tell their own stories and finds a way to resolve the situation. This article paves the way for further developments that must now be realized by the international community of experts involved in the care of people with Alzheimer's disease, from practical, academic and research perspectives. No patient or public was involved in the design or drafting of the discursive paper. WHAT PROBLEM DID THE STUDY ADDRESS?: The retrograde plunge is a phenomenon in which people living with Alzheimer's disease return to their past lives and re-experience with certain events. The retrograde plunge is a well-known concept that is poorly described in scientific literature and is sometimes misunderstood by families and professional caregivers. This discursive article explains the retrograde plunge phenomenon experienced by people living with Alzheimer's disease. WHAT WERE THE MAIN FINDINGS?: This article demonstrates how story theory helps nurses and families support people with retrograde plunges. This highlights the lack of consistency and uniformity in this phenomenon, which has implications for the quality of care, education and research. Story theory and the seven-phase inquiry process proposed by Smith and Liehr (in Middle-range theory for nursing, Springer Publishing Company, 2023) help to better understand and explain the retrograde plunge phenomenon. WHERE AND ON WHOM WILL THE RESEARCH HAVE AN IMPACT?: This article advances nurses' knowledge in the different fields of practice, teaching and research. This article proposes links among the retrograde plunge phenomenon, embodied language and narrative care approach; this could offer further ways to develop nursing knowledge. This study has the potential to advance the knowledge of practice and education and offers new opportunities for research. There was no trial or protocol registration as this article is a discussion.

Social acceptability of conservation interventions for flatback turtles: comparing expert and public perceptions

Sea turtles are facing significant threats, including anthropogenic warming, predation from feral animals, and sea level rise. While a range of intervention options are available, resource constraints and increasing time pressures means managers face the difficult task of prioritising options. To achieve successful conservation outcomes, managers are increasingly seeking to understand the social acceptability, as well as biological plausibility and economic feasibility, of these intervention options. Previous studies have used expert opinion as predictors of social acceptability, given their technical knowledge and experience implementing the interventions; however, the assumption that the social acceptability of interventions is the same for both the general public and experts is largely untested. We tested this assumption using surveys to assess the social acceptability of 24 interventions proposed for a population of flatback turtles Natator depressus in northwest Australia. Survey responses were collected from community members (residents) and experts (resource managers and researchers). Experts were asked to provide their own opinion of acceptability and how they perceived community members would rate intervention options. In general, residents ranked interventions that directly intervene with human behaviour or the environment as more acceptable than those that directly target turtles, while experts tended to favour direct turtle interventions. Experts incorrectly predicted that the community would not be influenced by the target of the intervention. Our findings highlight the importance of understanding social acceptability of interventions before implementation to inform management decisions and engagement and communication strategies, particularly when interventions might be controversial or restrict human behaviour directly.

It Takes a Village: An Interdisciplinary Approach to Preparing Internal Medicine Residents to Care for Patients at the Intersection of Women's Health, Gender-Affirming Care, and Health Disparities.

Objective: To create an interdisciplinary curriculum to teach key topics at the intersection of women's health, gender-affirming care, and health disparities to internal medicine (IM) residents. Materials and Methods: A core team of faculty from IM, Obstetrics and Gynecology, and Surgery partnered with faculty and fellows from other disciplines and with community experts to design and deliver the curriculum. The resulting curriculum consisted of themed half-day modules, each consisting of three to four inter-related topics, updated and repeated on an ∼3-year cycle. Health equity was a focus of all topics. Module delivery used diverse interactive learning strategies. Modules have been presented to ∼175 residents annually, beginning in 2015. To assess the curriculum, we used formative evaluation methods, using primarily anonymous, electronic surveys, and collected quantitative and qualitative data. Most surveys assessed resident learning by quantifying residents' self-reported comfort with skills taught in the module pre- and postsession. Results: Of 131 residents who completed an evaluation in 2022/23, 121 (90%) "somewhat" or "strongly" agreed with their readiness to perform a range of skills taught in the module. In all previous years where pre- and postsurveys were used to evaluate modules, we observed a consistent meaningful increase in the proportion of residents reporting high levels of comfort with the material. Residents particularly valued interactive teaching methods, and direct learning from community members and peers. Conclusion: Our interdisciplinary curriculum was feasible, valued by trainees, and increased resident learning. The curriculum provides a template to address equity issues across a spectrum of women's and gender-affirming care conditions that can be used by other institutions in implementing similar curricula.

The application of force plates and the community of experts in Russian dissertations for 2016–2022

In 90 Russian dissertation studies with the usage of force plates, which were performed in 48 scientific organizations, more than 20 thousand healthy participants and patients took part. They were supervised by 89 specialists, who, together with 167 official opponents and representatives of 43 leading organizations, can be classified as the corps of experts in this scientific field. The appropriate list is presented for the first time.
 Dissertation samples were distributed manly between clinical specialties (over 70%) and pedagogical specialties (approximately 20%). 14 different models (brands) of force plates were used in the dissertations. 6 of them were foreign, and the most frequently used ― in 55 dissertations ― were Russian force plates of three brands registered as medical devices, of which only one was an officially approved Measurement Device.
 In the analysis of the data obtained using the force plates, the dissertators applied 30 quantitative indices, of which "length", "speed" and "area" of the statokinesiogram were the most frequently used.
 The averaged characteristics of candidate and doctoral works in terms of the number of participants or patients included in the study, the number of sources, conclusions, etc. were represented. Interpretation of quantitative characteristics and content of dissertation works concerns comparison with the data of the analysis for the previous decade, and helps to reveal the features and the prospects of the stabilometry application.

The Annual Difference: How a Four-Century Debate between Confucian, Daoist, and Buddhist Thinkers on a Problem of Classical Exegesis Shaped a Predictive Mathematical Construct

In China, the precession of the equinoxes was conceptualized as an “annual difference” (suicha 歲差) between the tropical and sidereal year. The idea was introduced in the fourth century, it saw universal acceptance from the eighth century on, and it was in the four centuries in between that it was tried, debated, and spread whilst a Mediterranean-origin concept thereof arrived from India. Its four-century journey from fringe idea to universal truth is a well-studied point of interest in the history of astronomy. In this article, we will shift focus to the idea’s polymathic protagonists and epistemic foundations to explore how a scientific idea was born, debated, transmitted, and taught in Confucian commentary and, no less important, how politics, geography, regional schools, foreign transmission, and the Buddhist and Daoist religions shaped how thinkers engaged with it as individuals and as communities. Inspired by the work of Chen Kanli and Randall Collins, the goal is to show that there is nothing simple or inexorable about how even an empirically useful tool of predictive astronomical modeling is received in the relevant expert community, as it is but one element in a complex network of people and ideas aligning and opposing in ever-evolving strategies to assert relevance.

‘Populism’ and competing epistemic communities in English educational policy: A response to Craske and Watson

AbstractThis article constitutes a ‘reply and alternative’ to two papers that appeared in a 2021 Special Issue of British Educational Research Journal. Both articles drew on theories of populism as a political logic to explain recent trends in England's education policy. I begin by highlighting how the contributors mobilise ‘populist’ political logics within their own ‘anti‐populist’ discourse. I then argue that the theory of epistemic communities, borrowed from the field of public policy analysis, offers an alternative interpretation of the dynamics described in (and exemplified by) the two articles. This alternative interpretation foregrounds the values, beliefs and policy enterprises of two rival communities that seek to influence education policy through the supply of expertise. I argue that attending to how these communities function helps explain how a new group of policy entrepreneurs has come to constitute an increasingly influential ‘counter‐epistemic community’ and established a mutually beneficial trade in legitimacy with English policy makers. To date, the theory of epistemic communities has been under‐utilised in the study of education policy, but applying the theory to education policy in England provides new insights into how these communities function when the nature of expertise is contested. England's educational policy context also exemplifies the importance of ‘fit’ between policy makers and experts’ beliefs, and the role of policy makers in assembling and curating communities of experts.

An agenda for the future of Arctic snow research: the view from Svalbard

The Arctic region is warming at over twice the mean rate of the Northern Hemisphere and nearly four times faster than the globe since 1979. The local rate of warming is even higher in the European archipelago of Svalbard. This warming is transforming the terrestrial snow cover, which modulates surface energy exchanges with the atmosphere, accounts for most of the runoff in Arctic catchments and is also a transient reservoir of atmospherically deposited compounds, including pollutants. Improved observations, understanding and modelling of changes in Arctic snow cover are needed to anticipate the effects these changes will have on the Arctic climate, atmosphere, terrestrial ecosystems and socioeconomic factors. Svalbard has been an international hub of polar research for many decades and benefits from a well-developed science infrastructure. Here, we present an agenda for the future of snow research in Svalbard, jointly developed by a multidisciplinary community of experts. We review recent trends in snow research, identify key knowledge gaps, prioritize future research efforts and recommend supportive actions to advance our knowledge of present and future snow conditions pertaining to glacier mass balance, permafrost, surface hydrology, terrestrial ecology, the cycling and fate of atmospheric contaminants, and remote sensing of snow cover. This perspective piece addresses issues relevant to the circumpolar North and could be used as a template for other national or international Arctic research plans.

Role of recombinant factor VIIa in the clinical management of severe postpartum hemorrhage: consensus among European experts

Objectives There have been significant advances in the medical management of severe postpartum hemorrhage (sPPH) over recent decades, which is reflected in numerous published guidelines. To date, many of the currently available national and international guidelines recommend recombinant factor VIIa (rFVIIa) to be used only at a very late stage in the course of sPPH, as a “last resort”, before or after hysterectomy. Based on new safety data, rFVIIa has recently been approved by the European Medicines Agency (EMA) and Swissmedic for use in sPPH, if uterotonics are insufficient to achieve hemostasis, which in fact is significantly earlier in the course of postpartum hemorrhage (PPH). We therefore aimed to develop expert consensus guidance as a step toward standardizing care with the use of rFVIIa for clinicians managing women experiencing life-threatening sPPH. Methods The consensus process consisted of one face-to-face meeting with a group of nine experts, including eight obstetrician-gynecologists and a hematologist highly experienced in sPPH care in tertiary care perinatal centers. The panel was representative of multidisciplinary expertise in the European obstetrics community and provided consensus opinion in answer to pre-defined questions around clinical practice with rFVIIa in the management of sPPH. Recommendations have been based on current national and international guidelines, extensive clinical experience, and consensus opinion, as well as the availability of efficacy and new safety data. Results The expert panel developed 17 consensus statements in response to the 13 pre-defined questions on the use of rFVIIa in the management of sPPH including: available efficacy and safety data and the need for interdisciplinary expertise between obstetricians, anesthesiologists, and hematologists in the management of sPPH. Based on novel data, the experts recommend: (1) earlier administration of rFVIIa in patients with sPPH who do not respond to uterotonic administration to optimize the efficacy of rFVIIa; (2) the importance of hematological parameter prerequisites prior to the administration of rFVIIa to maximize efficacy; and (3) continued evaluation or initiation of further invasive procedures according to standard practice. Furthermore, recommendations on the timing of rFVIIa treatment within the sPPH management algorithm are outlined in a range of specified clinical scenarios and settings, including vaginal delivery, cesarean section, and smaller birthing units before transfer to a tertiary care center. The panel agreed that according to available, and new data, as well as real-world experience, there is no evidence that the use of rFVIIa in patients with sPPH increases the risk of thromboembolism. The authors acknowledge that there is still limited clinical effectiveness data, as well as pharmacoeconomic data, on the use of rFVIIa in sPPH, and recommend further clinical trials and efficacy investigation. Conclusions This expert panel provides consensus guidance based on recently available data, clinical experience, and expert opinion, augmented by the recent approval of rFVIIa for use in sPPH by the EMA. These consensus statements are intended to support clinical care for sPPH and may help to provide the impetus and a starting point for updates to existing clinical practice guidelines.

The growing research toolbox for SLC13A5 citrate transporter disorder: a rare disease with animal models, cell lines, an ongoing Natural History Study and an engaged patient advocacy organization.

TESS Research Foundation (TESS) is a patient-led nonprofit organization seeking to understand the basic biology and clinical impact of pathogenic variants in the SLC13A5 gene. TESS aims to improve the fundamental understanding of citrate's role in the brain, and ultimately identify treatments and cures for the associated disease. TESS identifies, organizes, and develops collaboration between researchers, patients, clinicians, and the pharmaceutical industry to improve the lives of those suffering from SLC13A5 citrate transport disorder. TESS and its partners have developed multiple molecular tools, cellular and animal models, and taken the first steps toward drug discovery and development for this disease. However, much remains to be done to improve our understanding of the disorder associated with SLC13A5 variants and identify effective treatments for this devastating disease. Here, we describe the available SLC13A5 resources from the community of experts, to foundational tools, to in vivo and in vitro tools, and discuss unanswered research questions needed to move closer to a cure.