Development and implementation of the AIDA International Registry for patients with Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis syndrome

Objective: Aim of this paper is to illustrate the methodology, design, and development of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to patients with the Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis (PFAPA) syndrome. Methods: This is a physician-driven, non-population- and electronic-based registry proposed to gather real-world demographics, clinical, laboratory, instrumental and socioeconomic data from PFAPA patients. Data recruitment is realized through the on-line Research Electronic Data Capture (REDCap) tool. This registry is thought to collect standardized information for clinical research leading to solid real-life evidence. The international scope and the flexibility of the registry will facilitate the realization of cutting-edge study projects through the constant updating of variables and the possible merging and transfer of data between current and future PFAPA registries. Results: A total of 112 centers have already been involved from 23 countries and 4 continents starting from August 24th, 2021, to April 6th, 2022. In total 56/112 have already obtained the formal approval from their local Ethics Committees. The platform counts 321 users (113 principal investigators, 203 site investigators, two lead investigators, and three data managers). The registry collects retrospective and prospective data using 3,856 fields organized into 25 instruments, including PFAPA patient's demographics, medical histories, symptoms, triggers/risk factors, therapies, and impact on the healthcare systems. Conclusions: The development of the AIDA International Registry for PFAPA patients will enable the on-line collection of standardized data prompting real-life studies through the connection of worldwide groups of physicians and researchers. This project can be found on NCT 05200715

Environmental and Social Pressures in Mining. Results from a Sustainability Hotspots Screening

In recent years, increased interest and actions have been taken to better understand, and mitigate, sustainability impacts of mining activities, by both industry and policy. The present work reports on a sustainability hotspots screening performed for the EU Horizon 2020 “Integrated Mineral Technologies for More Sustainable Raw Material Supply„ (ITERAMS) project, which foresees a more efficient water recycling, tailings valorization, and minimization of environmental footprint. The focus of this paper is on social and environmental issues in mining. Different methodologies were explored, starting from a qualitative causal loop modelling. Afterwards, an environmental and social LCA screening was performed using well-accepted databases and methods, thus completing results with a literature research. The main findings related to the importance of the supply chain, the vulnerability of local communities, and the toxic emissions from tailings offer a starting point to reflect on the specific social, socio-economic, and environmental context which may influence these issues. A better understanding of the environmental and social pressures associated with mining is not only crucial to orient the sustainability assessment foreseen for the ITERAMS project, but also to contribute in terms of methodology to the challenges tackled by policy and research worldwide towards a more sustainable mining

Synergies and challenges of bottom-up and top-down approaches for assessing social impacts in mining operation

peer reviewedPurpose The mining industry plays a critical role in the global economy by providing raw materials and metals for various sectors, but it is also associated with environmental and social impacts. This paper presents a comparison of the findings from social life cycle assessment (S-LCA) with those obtained from a stakeholders’ risk perception analysis. The goal is to provide a multifaceted view on the challenges faced by the mining industry in achieving sustainable practices. Methods This research reports the results of S-LCA and stakeholders’ risk perception analysis used to evaluate the social dimension of sustainability in two different European Horizon 2020 projects: (i) recovery of secondary metals and minerals from mining residues through bioleaching and chemical precipitation (project NEMO with a demonstration site in Finland), and (ii) recycling of wastewater and valorization of tailings from mining activities to create geopolymers through chemical activation (project ITERAMS with a demonstration site in Portugal). Results The S-LCA conducted in NEMO reveals that fair salary is the social category presenting the highest risk (22% of the total). This risk is unequally shared between foreground activities (4%) and background activities (18%), and it occurs mostly in Finland. The S-LCA in ITERAMS shows that the low percentage of employees organized in trade unions accounts for the highest social risk (14%), occurring mostly with the background activities (8.5% out of the 14%). The risk perception analysis conducted among involved stakeholders for both projects highlighted that the analysis performed using only S-LCA databases overestimated some social issues (e.g., access to biomass, trade unionism) that were not relevant for local stakeholders while underestimating, or even ignoring, other social issues that are considered important by the same stakeholders (e.g., health and safety, housing prices). Conclusions The two case studies show the critical need to integrate locally gathered data from stakeholders directly involved in the projects with the broader insights offered by sector-level S-LCA. Local analysis can capture site-specific dynamics and social risk perceptions, while S-LCA can extend the analysis to the entire supply chain. Both analyses highlighted that one of the main limitations of the current S-LCA framework is the omission of the positive environmental, social and economic effects resulting from the proposed projects. Ultimately, these case studies provided valuable insights for the stakeholders involved in both projects, facilitating information sharing concerning the primary social risks associated with the development and implementation of the technologies proposed by the projects. This empowers decision-makers with the information required to formulate strategies that can enhance the sustainability of the bioleaching and geopolymer technologies used to valorize mining residues

Can S-LCA methodology support responsible sourcing of raw materials in EU policy context?

Purpose Access, affordability and sustainability of raw material supply chains are crucial to the sustainable development of the European Union (EU) for both society and economy. The study investigates whether and how the social life cycle assessment (S-LCA) methodology can support responsible sourcing of raw materials in Europe. The potential of social indicators already available in an S-LCA database is tested for the development of new metrics to monitor social risks in raw material industries at EU policy level. Methods The Product Social Impact Life Cycle Assessment (PSILCA) database was identified as a data and indicators source to assess social risks in raw material industries in EU-28 and extra-EU countries. Six raw material country sectors in the scope of the European policy on raw materials were identified and aggregated among those available in PSILCA. The selection of indicators for the assessment was based on the RACER (Relevance, Acceptance, Credibility, Ease, Robustness) analysis, leading to the proposal of 9 social impact categories. An S-LCA of the selected raw material industries was, thus, performed for the EU-28 region, followed by a contribution analysis to detect direct and indirect impacts and investigate related supply chains. Finally, the social performance of raw material sectors in EU-28 was compared with that of six extra-EU countries. Results and discussion Considering the overall social risks in raw material industries, “Corruption”, “Fair salary”, “Health and safety” and “Freedom of association and collective bargaining” emerged as the most significant categories both in EU and extra-EU. EU-28 shows an above-average performance where the only exception is represented by the mining and quarrying sector. An investigation of the most contributing processes to social impact categories for EU-28 led to the identification of important risks originating in the supply chain and in extra-EU areas. Therefore, the S-LCA methodology confirmed the potential of a life cycle perspective to detect burdens shifting and trade-offs. However, only a limited view on the sectoral social performance could be obtained from the research due to a lack of social data. Conclusions The S-LCA methodology and indicators appear appropriate to perform an initial social sustainability screening, thus enabling the identification of hotspots in raw material supply chains and the prioritization of areas of action in EU policies. Further methodological developments in the S-LCA field are necessary to make the approach proposed in the paper fully adequate to support EU policies on raw materials.JRC.D.3-Land Resource