Supporting international networks through platforms for standardised data collection—the European Registries for Rare Endocrine Conditions (EuRRECa) model

Rare endocrine pathology is manifested by either a deficiency or excess of one or more hormones. These conditions can be life-threatening and are almost universally associated with long-term morbidity. Understanding the aetiology of these conditions requires multicentre collaboration and expertise, most often across national boundaries, with the capacity for long-term follow-up. The EuRRECa (European Registries for Rare Endocrine Conditions) project (www.eurreca.net), funded by the EU Health Programme, aims to support the needs of the wider endocrine community by maximising the opportunity for collaboration between patients, health care professionals and researchers across Europe and beyond. At the heart of the EuRRECa collaboration is a Core Endocrine Registry that collects a core dataset for all rare endocrine conditions that are covered within Endo-ERN. The registry incorporates patient reported markers of clinical outcome and will signpost participants to high-quality, disease-specific registries. Furthermore, an electronic surveillance programme (e-REC) captures clinical activity and epidemiology for these rare conditions. EuRRECa receives guidance compliant with the highest ethical standards from Expert Working Groups that align with the Main Thematic Groups of Endo-ERN. Security, data quality and data governance are cornerstones of this platform. Clear policies that are acceptable to patients, researchers and industry for data governance coupled with widespread dissemination and knowledge exchange through closely affiliated stakeholders will ensure sustainability beyond the current lifetime of the project. This paper describes the infrastructure that has been developed, stakeholder involvement, the data fields that are captured within the registry and details on the process for using the platform

Supporting international networks through platforms for standardised data collection-the European Registries for Rare Endocrine Conditions (EuRRECa) model

Rare endocrine pathology is manifested by either a deficiency or excess of one or more hormones. These conditions can be life-threatening and are almost universally associated with long-term morbidity. Understanding the aetiology of these conditions requires multicentre collaboration and expertise, most often across national boundaries, with the capacity for long-term follow-up. The EuRRECa (European Registries for Rare Endocrine Conditions) project (), funded by the EU Health Programme, aims to support the needs of the wider endocrine community by maximising the opportunity for collaboration between patients, health care professionals and researchers across Europe and beyond. At the heart of the EuRRECa collaboration is a Core Endocrine Registry that collects a core dataset for all rare endocrine conditions that are covered within Endo-ERN. The registry incorporates patient reported markers of clinical outcome and will signpost participants to high-quality, disease-specific registries. Furthermore, an electronic surveillance programme (e-REC) captures clinical activity and epidemiology for these rare conditions. EuRRECa receives guidance compliant with the highest ethical standards from Expert Working Groups that align with the Main Thematic Groups of Endo-ERN. Security, data quality and data governance are cornerstones of this platform. Clear policies that are acceptable to patients, researchers and industry for data governance coupled with widespread dissemination and knowledge exchange through closely affiliated stakeholders will ensure sustainability beyond the current lifetime of the project. This paper describes the infrastructure that has been developed, stakeholder involvement, the data fields that are captured within the registry and details on the process for using the platform.Diabetes mellitus: pathophysiological changes and therap

Seismic Analysis of Pile in Liquefiable Soil and Plastic Hinge

Liquefaction is one of the leading seismic actions to cause extensive damage to buildings and infrastructure during earthquakes. In many historic cases, plastic hinge formations in piles were observed at inexplicable locations. This project investigates the behaviour of piled foundations within soils susceptible to liquefaction using numerical analysis carried out in Abaqus in terms of plastic hinge development. Three different soil profiles were considered in this project by varying the thickness of both the liquefiable and non-liquefiable layers, pile length, free and fixed head pile conditions. Modelling a single pile as a beam-column element carrying both axial and El-Centro record earthquake loading produced results of the seismic behaviour of piles that could be assessed by Force-Based Seismic Design (FBSD) approaches. The displacements and deformations induced by dynamic loads were analysed for piles affected by liquefaction and the results used to demonstrate the pile capacity and discuss the damage patterns and location of plastic hinges. Parametric studies generally demonstrate that plastic hinge formation occurs at the boundaries of the liquefiable and non-liquefiable layers; however, the location can be affected by a variety of factors such as material properties, pile length and thickness of liquefying soil layer

Thermal properties of insulation boards made of tree bark & hemp residues

Two disparate waste materials were mixed to identify the likelihood of constructing insulation boards. Tree bark and Hemp (cannabis) residues were combined in different proportions and with two dissimilar types of glue. The thermal conductivity (λ) for all boards was measured. Diverse methods of processing the final boards demonstrated altered thermal properties based also on the different density (low and medium). The results have validated the possibility of exploiting local waste materials to produce an eco-friendly, low priced insulation product with competitive (λ) compared to the market products. All materials were collected within a small range to the laboratory (< 100 km). The energy requirements and the carbon footprint of these boards were kept low compared to traditional chemical insulation materials. © 2019, Kauno Technologijos Universitetas. All rights reserved