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Family-based treatment (FBT) for anorexia nervosa (AN) is where a patient's family and healthcare provider collaborate to restore physical health and establish normal eating behaviours. Its efficacy has been well demonstrated, especially in outpatient treatment for patients younger than 18 years within three years of onset, and its outcomes are influenced by paternal participation. Cultural and environmental factors, such as the availability of paternal work and limited session time because of insurance policies, have challenged the widespread implementation of FBT in Japan. Thus, this study explored how FBT can be effectively implemented in an inpatient setting using data sharing with families. Parents attended three meal sessions daily, and the ward nurses supported the sessions. Parents recorded the patient's daily weight, BMI, and meal sessions on a shared Google spreadsheet, which the father subsequently maintained. A visual analysis was conducted using a single-case design. We administered FBT to seven female inpatients with AN aged 12-36 years between April 2022 and March 2023. Paternal participation was 100%, and the fathers maintained treatment responsibility in the spreadsheet even if they missed a session. The patients' BMI were between 10.9-15.7 on admission and 15.1-17.5 on discharge. Six patients achieved a BMI of 20 within 3-8 months of discharge. Using the spreadsheet data facilitated the identification of weight gain and appropriate eating behaviours. Parents were aware of the risk of AN to their children's lives, and a sense of urgency greatly motivated participation in the FBT. The father's active participation and the presence of ward nurses in meal sessions contributed to weight gain and appropriate eating behaviours. While these positive results highlight potential indications for inpatient FBT in Japan, the findings are limited to this single-centre study. [ABSTRACT FROM AUTHOR]

Abstract Space-based remote sensing is playing a prominent role for disaster management and socioeconomic development in Asia-Pacific. However, the unequal access to space technology in the region prompts the establishment of regional data-sharing agreements. This situation provides an opportunity for the region's leading space powers to enhance their regional influence. By invoking the concept of concept of Normative Power from the field of international relations, this article demonstrates (1) the applicability of this concept in the space sector, through an analysis of the European space sector and (2) the usefulness for decision-makers in advanced space powers to follow its methodological framework to design efficient strategies for enhanced regional influence. In particular, this paper argues that a tight collaboration with the Association of Southeast Asian Nations on space data sharing could participate in an ambitious Japanese diplomatic strategy of enhancement of its normative influence over the Asian space sector, in times marked by the rise of other powerful regional space actors. [ABSTRACT FROM AUTHOR]

Background: As in other countries, the traditional doctor-patient relationship in the Japanese healthcare system has often been characterised as being of a paternalistic nature. However, in recent years there has been a gradual shift towards a more participatory-patient model in Japan. With advances in technology, the possibility to use digital technologies to improve patient interactions is growing and is in line with changing attitudes in the medical profession and society within Japan and elsewhere. The implementation of an online patient engagement platform is being considered by the Myotonic Dystrophy Registry of Japan. The aim of this exploratory study was to understand patients' views and attitudes to using digital tools in patient registries and engagement with medical research in Japan, prior to implementation of the digital platform.Methods: We conducted an exploratory, cross-sectional, self-completed questionnaire with a sample of myotonic dystrophy (MD) patients attending an Open Day at Osaka University, Japan. Patients were eligible for inclusion if they were 18 years or older, and were diagnosed with MD.Results: A total of 68 patients and family members attended the Open Day and were invited to participate in the survey. Of those, 59 % submitted a completed questionnaire (n = 40). The survey showed that the majority of patients felt that they were not receiving the information they wanted from their clinicians, which included recent medical research findings and opportunities to participate in clinical trials, and 88 % of patients indicated they would be willing to engage with digital technologies to receive relevant medical information. Patients also expressed an interest in having control over when and how they received this information, as well as being informed of how their data is used and shared with other researchers.Conclusion: Overall, the findings from this study suggest that there is scope to develop a digital platform to engage with patients so that they can receive information about medical care and research opportunities. While this study group is a small, self-selecting population, who suffer from a particular condition, the results suggest that there are interested populations within Japan that would appreciate enhanced communication and interaction with healthcare teams. [ABSTRACT FROM AUTHOR]

Introduction: In Japan, there are approximately 300 projects conducting research on rare diseases supported by the Ministry of Health, Labour and Welfare of Japan (MHLW) and the Japan Agency for Medical Research and Development (AMED). Diverse data, including clinical, genomic, and sample‐related data, are generated by these projects. However, at present, such data are managed individually by each project. This makes it difficult for third parties to ascertain the data generated by projects. Methods: Again this background, at the beginning of 2017, the AMED started the National Platform for Rare Diseases Data Registry of Japan (RADDAR‐J), whose mission is to construct a cross‐sectional data integration platform incorporating projects supported by the AMED and MHLW. RADDAR‐J promotes data sharing by the projects in accordance with the data‐sharing policy established by the AMED, which classifies data sharing into three categories based on the strategies used to protect the rights of researchers while promoting data sharing. RADDAR‐J integrates and analyzes data shared by each project to add value to the resources and promote secondary use by third parties while protecting the rights of the researchers who shared their data. The platform is designed to provide incentives to projects that shared their data by supporting registry construction or genomic analysis to promote data sharing. RADDAR‐J also has the function of data identification to securely integrate data originating from the same person. RADDAR‐J accelerates clinical research by encouraging each project to utilize a central ethics committee. Results/Conclusion: The use of the platform by projects is expected to lead to streamlined data collection, improved quality assurance, improved access to data, and promotion of joint research and the secondary use of shared data. These benefits will accelerate research into diagnosis and treatment technologies and will hopefully lead to improved quality of life for patients with rare diseases. [ABSTRACT FROM AUTHOR]

Introduction: Global data sharing is essential. This is the premise of the Academic Research Organization (ARO) Council, which was initiated in Japan in 2013 and has since been expanding throughout Asia and into Europe and the United States. The volume of data is growing exponentially, providing not only challenges but also the clear opportunity to understand and treat diseases in ways not previously considered. Harnessing the knowledge within the data in a successful way can provide researchers and clinicians with new ideas for therapies while avoiding repeats of failed experiments. This knowledge transfer from research into clinical care is at the heart of a learning health system. Methods: The ARO Council wishes to form a worldwide complementary system for the benefit of all patients and investigators, catalyzing more efficient and innovative medical research processes. Thus, they have organized Global ARO Network Workshops to bring interested parties together, focusing on the aspects necessary to make such a global effort successful. One such workshop was held in Austin, Texas, in November 2017. Representatives from Japan, Taiwan, Singapore, Europe, and the United States reported on their efforts to encourage data sharing and to use research to inform care through learning health systems. Results: This experience report summarizes presentations and discussions at the Global ARO Network Workshop held in November 2017 in Austin, TX, with representatives from Japan, Korea, Singapore, Taiwan, Europe, and the United States. Themes and recommendations to progress their efforts are explored. Standardization and harmonization are at the heart of these discussions to enable data sharing. In addition, the transformation of clinical research processes through disruptive innovation, while ensuring integrity and ethics, will be key to achieving the ARO Council goal to overcome diseases such that people not only live longer but also are healthier and happier as they age. Conclusions: The achievement of global learning health systems will require further exploration, consensus‐building, funding aligned with incentives for data sharing, standardization, harmonization, and actions that support global interests for the benefit of patients. [ABSTRACT FROM AUTHOR]

There are more than 300 research groups for rare diseases in Japan. Although various clinical and genomic information of patients are being collected by the groups, the information is managed individually by each research group and the current practices for managing and sharing research data are not very efficient. Since "rare diseases" are literally rare, the understanding of the underlying disease mechanisms are incomplete and collecting a sufficient number of patients for clinical trials is difficult. Therefore, there is a need to collect and integrate the data and construct a data integration platform for rare disease research. Funded by the Japan Agency for Medical Research and Development, a national research and development project to establish a standard platform and supporting organization for rare disease registries in Japan is currently under way. In this article, we report the background, purpose, process, results, current status, and future plans of this project.

On March 11, 2011, the Great East Japan Earthquake and ensuing tsunami that hit the northeastern coastal region of Japan caused about 18,000 casualties and destroyed numerous buildings. Additionally, many medical facilities were damaged and patient medical records lost. In order to maintain patient clinical information, a prefectural medical network system, the Miyagi Medical and Welfare Information Network (MMWIN), began providing backup data storage services in 2013 for hospitals, clinics, pharmacies, and other care facilities as a precaution for upcoming disasters. This system also facilitates the sharing of clinical information trans-institutionally as long as patients provide consent for this. In the present study, we examined the development of the MMWIN and its efficiency during the 5 years from its launch, and identified general problems to maintain such a backup system. At the end of 2018, the system contained backup data from more than 11 million patients with more than 420 million data items; more than 900 facilities were MMWIN users, and the number of patients consenting to sharing their clinical information reached 90,000. The use of the system has become widespread and the accumulating data should be utilized for research in the future. Maintaining a balance between income and cost is critical to make this project independent from local government subsidies.

Background: Platforms for sharing genomic and phenotype data have been developed to promote genomic research, while maximizing the utility of existing datasets and minimizing the burden on participants. The value of genomic analysis of trios or family members has increased, especially in rare diseases and cancers. This article aims to argue the necessity of protection when sharing data from both patients and family members., Main Text: Sharing patients' and family members' data collectively raises an ethical tension between the value of datasets and the rights of participants, and increases the risk of re-identification. However, current data-sharing policies have no specific safeguards or provisions for familial data sharing. A quantitative survey conducted on 10,881 general adults in Japan indicated that they expected stronger protection mechanisms when their family members' clinical and/or genomic data were shared together, as compared to when only their data were shared. A framework that respects decision-making and the right of withdrawal of participants, including family members, along with ensuring usefulness and security of data is needed. To enable this, we propose recommendations on ancillary safeguards for familial data sharing according to the stakeholders, namely, initial researchers, genomic researchers, data submitters, database operators, institutional review boards, and the public and participants., Conclusions: Families have played significant roles in genetic research, and its value is re-illuminated in the era of genomic medicine. It is important to make progress in data sharing while simultaneously protecting the privacy and interests of patients and families, and return its benefits to them.