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The International Network of Twin Registries (INTR) aims to foster scientific collaboration and promote twin research on a global scale by working to expand the resources of twin registries around the world and make them available to researchers who adhere to established guidelines for international collaboration. Our vision is to create an unprecedented scientific network of twin registries that will advance knowledge in ways that are impossible for individual registries, and includes the harmonization of data. INTR will also promote a broad range of activities, including the development of a website, formulation of data harmonization protocols, creation of a library of software tools for twin studies, design of a search engine to identify research partners, establishment of searchable inventories of data and biospecimens, development of templates for informed consent and data sharing, organization of symposia at International Society of Twin Studies conferences, support for scholar exchanges, and writing grant proposals.

Il lavoro, basato sulla lettura dei registri della Massa presenti nell'Archivio di Stato di Pisa, Comune Divisione A, consiste nell'analisi della gestione del debito pubblico, in un periodo caratterizzato dalla speculazione degli stati su di esso, e l'illustrazione della politica economica presa dal governo di Pietro Gambacorta nell'ultimo quarto del XIV secolo a Pisa.

Randomized controlled trials (RCTs) are essential for the approval of new therapies; however, because of their design, they provide little insight concerning disease epidemiology/etiology and current clinical practice. Particularly, in lung disease, rigid inclusion/exclusion criteria can limit the generalizability of pivotal trial data. Noninterventional studies (NIS), conducted through the well-established mechanism of patient registries, are undervalued as a means to close data gaps left by RCTs by providing essential data that can guide patient care at different levels from clinical decision-making to health-care policy. While NIS contribute valuable data in all disease areas, their importance in rare diseases cannot be underestimated. In respiratory disease, registries have been essential in understanding the natural history and different phenotypes of rare conditions, such as alpha 1 antitrypsin deficiency, cystic fibrosis, and idiopathic pulmonary fibrosis. Importantly, additional therapeutic outcome data were generated. While measures for enhancing data quality in RCTs have evolved significantly, the approach and effectiveness of registries is variable. Within this article, we review the contribution of registries to pulmonary disease and make recommendations for their effective management. Additionally, we assess limitations of registry data as well as challenges to registry operation, including the impact of the European Union General Data Protection Regulation.

Sulla base dell'analisi di alcuni registri inediti dell'Archivio di Stato di Genova, l'Autore investiga sulle condizioni di vita degli equipaggi a bordo di galee genovesi impiegate in operazioni militari nei decenni a cavallo tra i secoli XIV e XV, ponendole a confronto con i dati desumibili dagli studi esistenti sugli equipaggi delle galee mercantili dello stesso periodo. I risultati del confronto portano a concludere che le differenze nel regime alimentare tra ufficiali ed equipaggio delle unità militari risultassero meno marcate di quelle rilevate per la navigazione commerciale

Riassunto Il presente lavoro esamina la possibilità di adottare la tecnologia dei registri distribuiti nell'industria del post-trading nei mercati finanziari, descrivendo dei possibili scenari relativi alle pratiche di mercato esistenti e agli operatori coinvolti nel settore. Dalle considerazioni effettuate, emerge che la transizione del post-trading in un sistema distribuito porterebbe un valore aggiunto a livello sistemico in termini di efficienza di processi e di costi di transazione. Il successo dell'implementazione dipenderebbe non tanto dagli aspetti tecnici, ma piuttosto dalla volonta dei legislatori europei di accogliere e regolare l'utilizzo della suddetta tecnologia, nonché dalla presenza di una collaborazione attiva tra i vari stakeholder del settore.

Collecting and reporting national data has become a routine practice for assisted reproductive technology (ART) governance. This article compares the building of national registries, the making of health statistics, and the utilization of these data in Japan, Taiwan, and South Korea. Instead of viewing data registries as tools for health surveillance or monitoring, we approach them in terms of their effectiveness in generating care. Conceptualizing ART data reporting as care infrastructure, built on Maria Puig de la Bellacasa's "matters of care," allows us to compare the extent to which data are collected for strengthening a community's ethical obligation, presented as indicators that could reflect quality of care and inform evidence-based policy making that promotes clinical practices for healthy outcomes. We find that sociotechnical imaginaries for ART were shaped by the fact that, in its early stages, in vitro fertilization was considered controversial in Japan, a source of nationalist glory in Taiwan, and a marginal procedure in South Korea. This in turn led to different trajectories of designing national registries in these countries, resulting in different care outcomes. We also point to the importance of mediators, including reflexive medical practitioners, care-centered state bureaucrats, and activists, in translating registry data into better ART health care.

The serious adverse events associated with metal on metal hip replacements have highlighted the importance of improving methods for monitoring surgical implants. The new European Union (EU) device regulation will enforce post-marketing surveillance based on registries among other surveillance tools. Europe has a common regulatory environment, a common market for medical devices, and extensive experience with joint replacement registries. In this context, we elaborate how joint replacement registries, while building on existing structure and data, can better ensure safety and balance risks and benefits.

Background The serious adverse events associated with metal on metal hip replacements have highlighted the importance of improving methods for monitoring surgical implants. The new European Union (EU) device regulation will enforce post-marketing surveillance based on registries among other surveillance tools. Europe has a common regulatory environment, a common market for medical devices, and extensive experience with joint replacement registries. In this context, we elaborate how joint replacement registries, while building on existing structure and data, can better ensure safety and balance risks and benefits. Discussion Actions to improve registry-based implant surveillance include: enriching baseline and diversifying outcomes data collection; improving methodology to limit bias; speeding-up failure detection by active real-time monitoring; implementing risk-benefit analysis; coordinating collaboration between registries; and translating knowledge gained from the data into clinical decision-making and public health policy. Summary The changes proposed here will improve patient safety, enforce the application of the new legal EU requirements, augment evidence, improve clinical decision-making, facilitate value-based health-care delivery, and provide up-to-date guidance for public health.

Abstract Introduction: Disease and health outcomes registries, one of the most important information resources in health care and clinical research, are collections of information about individuals, usually focused around a specific diagnosis or condition. Gathering such information for registries can be done electronically by different methods and technologies. Mobile smartphones are an innovative technology with valuable features and growing capabilities that can be applied to this purpose. But like every IT solution, it has its own advantages and challenges. As a limited number of studies have investigated the use of smart mobile phones as a data collection tool, the objective of this paper is to give a brief review on potential, challenges and concerns of adaption this device has, for data collection. Methods: In the first step, three databases, PMC, PubMed and ScienceDirect and also, the most popular public search engine, Google, were searched by making terms of keyword combinations to find relevant articles. Most results were obtained by terms of "Use of Mobile Phone for Capturing Patient Data" and "Smart mobile health data collection". Second-most search results were picked out due to studying their titles and abstracts. In this step, most relevant articles were categorized by numbered lists to specify their priority in relevancy and unrelated or non-significant work was put aside. Finally, most-relevant articles were selected to study and conclude. Results: Mobile-based data collection makes data entry possible whenever and wherever a person is. Being light-weight and popular, mobile smartphones are preferred to other mobile devices. They support a variety of technical functions such as communication and network connection, data storage and processing, embedded sensing, capturing different types of data (text, voice, image, etc.) which make these devices considerable to play a role in health data collection. However, some challenges such as security (privacy and confidentiality of patient information), political considerations and standards, usability and user acceptance, as well as less processing and storage power compared to personal computers are barriers for adoption of these devices in health sectors. Conclusion: The capabilities and availability of mobile smart phones, give them competency as data collection tools in registry software. Portability and network connectivity, ideally, provide real-time data capturing at the point of care, and good solution for data collection in deprived areas. So, smartphones can be used like a mobile client for registry and for servers to record and transfer data. Nonetheless, there are notable considerations to successful integration, acceptance and cost-effectiveness of these devices in clinical settings. One consideration is the security and data exchange standards. It is necessary for health sector authorities to provide guidelines on manner and quality of utilization of mobile applications and devices. Moreover, raising the quality of mobile services and paying attention to technical aspects are important. Training of data collectors to use mobile applications and devices is an effective factor in user acceptance.

The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in Europe' (EPIRARE) project convened a meeting with experts of the competent health authorities to discuss the role of national institutional RD patient registries in supporting EU patient registration and the room for international cooperation. With this aim, this paper comparatively analyses the current situation of national institutional RD registries in the EU.