Biobanking provides benefit for future generations by facilitating medical research and subsequent translation and application of research findings. Long-term storage and research involving biological material and associated data necessitate the proper implementation of ethical and legal standards. A key principle includes recognizing informed consent as a crucial element for legitimizing the collection of biological material and data. Furthermore, any collected material and data must be employed exclusively for the research framework that aligns with the explicit consent provided by the participants. Last but not least, data privacy and security are essential in biobanking. This review elucidates chances and limitations of biobanking in the field of allogeneic hematopoietic cell transplantation. We discuss the practical implementation of the requirements, illustrated by the Collaborative Biobank, a collaborative research platform for research in blood cancer.

BACKGROUND: A sizeable proportion of pathogenic genetic variants identified in young children tested for congenital differences are associated with neurodevelopmental psychiatric disorders (NPD). In this growing group, a genetic diagnosis often precedes the emergence of diagnosable developmental concerns. Here, we describe DAGSY (Developmental Assessment of Genetically Susceptible Youth), a novel interdisciplinary \'genetic-diagnosis-first\' clinic integrating psychiatric, psychological and genetic expertise, and report our first observations and feedback from families and referring clinicians.
METHODS: We retrieved data on referral sources and indications, genetic and NPD diagnoses and recommendations for children seen at DAGSY between 2018 and 2022. Through a survey, we obtained feedback from twenty families and eleven referring clinicians.
RESULTS: 159 children (mean age 10.2 years, 57.2% males) completed an interdisciplinary (psychiatry, psychology, genetic counselling) DAGSY assessment during this period. Of these, 69.8% had a pathogenic microdeletion or microduplication, 21.5% a sequence-level variant, 4.4% a chromosomal disorder, and 4.4% a variant of unknown significance with emerging evidence of pathogenicity. One in four children did not have a prior NPD diagnosis, and referral to DAGSY was motivated by their genetic vulnerability alone. Following assessment, 76.7% received at least one new NPD diagnosis, most frequently intellectual disability (24.5%), anxiety (20.7%), autism spectrum (18.9%) and specific learning (16.4%) disorder. Both families and clinicians responding to our survey expressed satisfaction, but also highlighted some areas for potential improvement.
CONCLUSIONS: DAGSY addresses an unmet clinical need for children identified with genetic variants that confer increased vulnerability for NPD and provides a crucial platform for research in this area. DAGSY can serve as a model for interdisciplinary clinics integrating child psychiatry, psychology and genetics, addressing both clinical and research needs for this emerging population.

Global challenges, such as climate change, persistent poverty, and food insecurity are complex problems. These societal, environmental, and economic challenges cross scientific disciplines, communities, and geographies, requiring interdisciplinary, North-South solutions. Nevertheless, prevailing sustainability science responses are Western-centric. Some seminal studies have attempted to understand and engage with diverse knowledge systems. These include decolonial and Indigenous methodologies, such as \"Two-Eyed Seeing\", which emphasizes the importance of using both Western and Indigenous knowledge to gain a more comprehensive understanding of the world, and participatory action research, which highlights the importance of involving participants in the research process and promoting social change through collaborative effort. However, apart from in-country research collaborations with traditional Indigenous knowledge, most North-South studies overlook the role or influence of Western-centric views and therefore fail to recognize and incorporate diverse worldviews and knowledge systems. This may, in part, reflect the tendency to categorize research into disciplinary silos, but more likely is the unintentional, yet prevalent, view that Western science is \"objective and neutral.\" As more scholars from multiple disciplines and geographies focus on interdisciplinary North-South research, it is critical that researchers reflect on dominant research approaches and knowledge production. Studies can co-construct, reproduce, or control the forms of knowledge generated-whether intentional or unintentional. This paper presents an organizing framework to help researchers navigate, understand, and engage with diverse forms of knowledge in undertaking North-South research. The framework draws on empirical observations from the authors\' interdisciplinary research and from empirical cross-cultural literature. It comprises three contextual levels of influence, featuring guiding principles and subsequent practical actions researchers can use to navigate the complexities of knowledge co-construction in North-South research.
UNASSIGNED: The online version contains supplementary material available at 10.1007/s11625-024-01478-6.

Qualitative research methods are increasingly used in nutrition and dietetics research. Ethnography is an underexploited approach which seeks to explore the diversity of people and cultures in a given setting, providing a better understanding of the influences that determine their choices and behaviours. It is argued that traditional ethnography, that is, the methodology of living within participant communities, is a dated practice, with roots in colonialism, accessible to only researchers with the means, connections and status to conduct such research, typically white, privileged males. This paper proposes a formal interpretation of \'patchwork ethnography\', whereby research is carried out in situ around existing modern-day commitments of the researcher, thus enabling more researchers within health, nutrition and dietetic practice to benefit from the rich data that can be discovered from communities. This review proposes the concept that pragmatic patchwork ethnography is required, proposing a framework for implementation, providing researchers, particularly within the fields of human nutrition, dietetics and health, the accessibility and means to deploy a meaningful client-centric methodology. We present pragmatic patchwork ethnography as a modern method for use within multiple healthcare settings, thus adding a progressive brick in the wall of qualitative research.

Health research is rapidly changing with evidence being gathered through new agile methods. This evolution is critical but must be globally equitable so the poorest nations do not lose out. We must harness this change to better tackle the daily burden of diseases that affect the most impoverished populations and bring research capabilities to every corner of the world so that rapid and fair responses to new pathogen are possible; anywhere they appear. We must seize this opportunity to make research easier, better and more equitable. Currently too many nations are unable to generate the evidence or translate it to directly change health outcomes in their own communities. It is essential to act and harness this emerging change in how research data can be generated and shared, so that all nations sustainably gain from this development. There are positive examples to draw on from COVID-19, but we now need to act. Here we present an initiative to develop a new framework that can guide researchers in the design and execution of their studies. This highly agile system will work by adapting to risk and complexity in any given study, whilst generating quality, safe and ethical data.

Brain-computer interfaces (BCIs) translate brain activity into digital commands for interaction with the physical world. The technology has great potential in several applied areas, ranging from medical applications to entertainment industry, and creates new conditions for basic research in cognitive neuroscience. The BCIs of today, however, offer only crude online classification of the user\'s current state of mind, and more sophisticated decoding of mental states depends on time-consuming offline data analysis. The present paper addresses this limitation directly by leveraging a set of improvements to the analytical pipeline to pave the way for the next generation of online BCIs. Specifically, we introduce an open-source research framework that features a modular and customizable hardware-independent design. This framework facilitates human-in-the-loop (HIL) model training and retraining, real-time stimulus control, and enables transfer learning and cloud computing for the online classification of electroencephalography (EEG) data. Stimuli for the subject and diagnostics for the researcher are shown on separate displays using web browser technologies. Messages are sent using the Lab Streaming Layer standard and websockets. Real-time signal processing and classification, as well as training of machine learning models, is facilitated by the open-source Python package Timeflux. The framework runs on Linux, MacOS, and Windows. While online analysis is the main target of the BCI-HIL framework, offline analysis of the EEG data can be performed with Python, MATLAB, and Julia through packages like MNE, EEGLAB, or FieldTrip. The paper describes and discusses desirable properties of a human-in-the-loop BCI research platform. The BCI-HIL framework is released under MIT license with examples at: bci.lu.se/bci-hil (or at: github.com/bci-hil/bci-hil).

The supply-demand for ecosystem services (ESs) is the bridge between ecological security patterns (ESPs) and human wellbeing. This study proposed a research framework of ESP of \"supply-demand-corridor-node\" and took Xuzhou, China, as a research case, providing a new perspective for the construction of ESPs. The framework was divided into four sections: identifying the ecological source based on the ESs supply; utilizing multi-source economic-social data to characterize the demand of ESs and constructing a resistance surface; defining the ecological corridor in the study area by employing the Linkage Mapper; and identifying crucial ecological protection/restoration areas along the ecological corridor. The results showed that the area of the supply source of ESs in Xuzhou City is 573.89 km2, accounting for 5.19% of the city\'s total area. The spatial distribution of 105 ecological corridors revealed that there were multiple and dense ecological corridors in the middle of the city, but few in the northwest and southeast. A total of 14 ecological protection areas were located primarily in the south of the urban area, and 10 ecological restoration areas were located primarily in the middle and north of the urban area, with a total area of 4.74 km2. The findings of this article will be useful in developing ESPs and determining important ecological protection/restoration areas in Xuzhou, China. The research framework could potentially be used in other areas.

Mobile Health Interventions (MHIs) have addressed a range of healthcare challenges and have been evaluated using Randomized Controlled Trials (RCTs) to establish clinical effectiveness. Using PRISMA we conducted a systematic literature review of RCTs for MHIs and identified 70 studies which were analyzed and classified using Nickerson-Varshney-Muntermann (NVM) taxonomy. From the resultant iterations of the taxonomy, we extracted insights from the categorized studies. RCTs cover a wide range of health conditions including chronic diseases, general wellness, unhealthy practices, family planning, end-of-life, and post-transplant care. The MHIs that were utilized by the RCTs were varied as well, although most studies did not find significant differences between MHIs and usual care. The challenges for MHI-based RCTs include the use of technologies, delayed outcomes, patient recruitment, patient retention, and complex regulatory requirements. These variances can lead to a higher rate of Type I/Type II errors. Further considerations are the impact of infrastructure, contextual and cultural factors, and reductions in the technological relevancy of the intervention itself. Finally, due to the delayed effect of most outcomes, RCTs of insufficient duration are unable to measure significant, lasting improvements. Using the insights from seventy identified studies, we developed a classification of existing RCTs along with guidelines for MHI-based RCTs and a research framework for future RCTs. The framework offers opportunities for (a) personalization of MHIs, (b) use of richer technologies, and (c) emerging areas for RCTs.

Regardless of the prevalence and value of change initiatives in contemporary organizations, these often face resistance by employees. This resistance is the outcome of change recipients\' cognitive and behavioral reactions towards change. To better understand the causes and effects of reactions to change, a holistic view of prior research is needed. Accordingly, we provide a systematic literature review on this topic. We categorize extant research into four major and several subcategories: micro and macro reactions. We analyze the essential characteristics of the emerging field of change reactions along research issues and challenges, benefits of (even negative) reactions, managerial implications, and propose future research opportunities.

The mission of UN Decade of Healthy Ageing (2020-2030) is to improve the lives of older people, their families and their communities. In this paper, we create a conceptual framework and research agenda for researchers to knowledge to address the Decade action items. The framework builds on the main components of healthy ageing: Environments (highlighting society and community) across life courses (of work and family) toward wellbeing (of individuals, family members and communities). Knowledge gaps are identified within each area as priority research actions. Within societal environments, interrogating beliefs about ageism and about familism are proposed as a way to illustrate how macro approaches to older people influence their experiences. We need to interrogate the extent to which communities are good places to grow old; and whether they have sufficient resources to be supportive to older residents. Further articulation of trajectories and turning points across the full span of work and of family life courses is proposed to better understand their diversities and the extent to which they lead to adequate financial and social resources in later life. Components of wellbeing are proposed to monitor improvement in the lives of older people, their families and communities. Researcher priorities can be informed by regional and national strategies reflecting Decade actions.