The feasibility of hybrid solar-biomass power plants in India

We assess the feasibility of hybrid solar-biomass power plants for use in India in various applications including tri-generation, electricity generation and process heat. To cover this breadth of scenarios we analyse, with the help of simulation models, case studies with peak thermal capacities ranging from 2 to 10 MW. Evaluations are made against technical, financial and environmental criteria. Suitable solar multiples, based on the trade-offs among the various criteria, range from 1 to 2.5. Compared to conventional energy sources, levelised energy costs are high - but competitive in comparison to other renewables such as photovoltaic and wind. Long payback periods for hybrid plants mean that they cannot compete directly with biomass-only systems. However, a 1.2-3.2 times increase in feedstock price will result in hybrid systems becoming cost competitive. Furthermore, in comparison to biomass-only, hybrid operation saves up to 29% biomass and land with an 8.3-24.8 $/GJ/a and 1.8-5.2 ¢/kWh increase in cost per exergy loss and levelised energy cost. Hybrid plants will become an increasingly attractive option as the cost of solar thermal falls and feedstock, fossil fuel and land prices continue to rise. In the foreseeable future, solar will continue to rely on subsidies and it is recommended to subsidise preferentially tri-generation plants. © 2012 Elsevier Ltd.

Techno-economic assessment and uncertainty analysis of thermochemical processes for second generation biofuels

Biomass-To-Liquid (BTL) is one of the most promising low carbon processes available to support the expanding transportation sector. This multi-step process produces hydrocarbon fuels from biomass, the so-called “second generation biofuels” that, unlike first generation biofuels, have the ability to make use of a wider range of biomass feedstock than just plant oils and sugar/starch components. A BTL process based on gasification has yet to be commercialized. This work focuses on the techno-economic feasibility of nine BTL plants. The scope was limited to hydrocarbon products as these can be readily incorporated and integrated into conventional markets and supply chains. The evaluated BTL systems were based on pressurised oxygen gasification of wood biomass or bio-oil and they were characterised by different fuel synthesis processes including: Fischer-Tropsch synthesis, the Methanol to Gasoline (MTG) process and the Topsoe Integrated Gasoline (TIGAS) synthesis. This was the first time that these three fuel synthesis technologies were compared in a single, consistent evaluation. The selected process concepts were modelled using the process simulation software IPSEpro to determine mass balances, energy balances and product distributions. For each BTL concept, a cost model was developed in MS Excel to estimate capital, operating and production costs. An uncertainty analysis based on the Monte Carlo statistical method, was also carried out to examine how the uncertainty in the input parameters of the cost model could affect the output (i.e. production cost) of the model. This was the first time that an uncertainty analysis was included in a published techno-economic assessment study of BTL systems. It was found that bio-oil gasification cannot currently compete with solid biomass gasification due to the lower efficiencies and higher costs associated with the additional thermal conversion step of fast pyrolysis. Fischer-Tropsch synthesis was the most promising fuel synthesis technology for commercial production of liquid hydrocarbon fuels since it achieved higher efficiencies and lower costs than TIGAS and MTG. None of the BTL systems were competitive with conventional fossil fuel plants. However, if government tax take was reduced by approximately 33% or a subsidy of £55/t dry biomass was available, transport biofuels could be competitive with conventional fuels. Large scale biofuel production may be possible in the long term through subsidies, fuels price rises and legislation.

Congestion pricing by priority auction

This paper analyzes a communication network facing users with a continuous distribution of delay cost per unit time. Priority queueing is often used as a way to provide differential services for users with different delay sensitivities. Delay is a key dimension of network service quality, so priority is a valuable resource which is limited and should to be optimally allocated. We investigate the allocation of priority in queues via a simple bidding mechanism. In our mechanism, arriving users can decide not to enter the network at all or submit an announced delay sensitive value. User entering the network obtains priority over all users who make lower bids, and is charged by a payment function which is designed following an exclusion compensation principle. The payment function is proved to be incentive compatible, so the equilibrium bidding behavior leads to the implementation of "cµ-rule". Social warfare or revenue maximizing by appropriately setting the reserve payment is also analyzed.

Economic efficiency when prices are not fixed:disentangling quantity and price efficiency

This paper proposes an approach to compute cost efficiency in contexts where units can adjust input quantities and to some degree prices so that through their joint determination they can minimise the aggregate cost of the outputs they secure. The model developed is based on the data envelopment analysis (DEA) framework and can accommodate situations where the degree of influence over prices ranges from minimal to considerable. When units cannot influence prices at all the model proposed reduces to the standard cost efficiency DEA model for the case where prices are taken as exogenous. In addition to the cost efficiency model, we introduce an additive decomposition of potential cost savings into a quantity and a price component, based on Bennet indicators. © 2014 Elsevier Ltd.

Auto Warranty Data: Mean Cumulative Function

Стефанка Чукова, Хър Гуан Тео - В това изследване разглеждаме и разширяваме предишната ни работа по цензуриране, типично за авто гаранционни данни. За да разрешим проблема с непълната информация за километража, използваме линеен подход в непараметрични рамки. Оценяваме средните кумулативни гаранционни разходи (за превозно средство) и стандартната им грешка като функция на възрастта, на километража и на реалното (календарно) време.

Cloud Stratus: uma plataforma de middleware para desenvolvimento de aplicações em nuvem

Cloud Computing is a paradigm that enables the access, in a simple and pervasive way, through the network, to shared and configurable computing resources. Such resources can be offered on demand to users in a pay-per-use model. With the advance of this paradigm, a single service offered by a cloud platform might not be enough to meet all the requirements of clients. Ergo, it is needed to compose services provided by different cloud platforms. However, current cloud platforms are not implemented using common standards, each one has its own APIs and development tools, which is a barrier for composing different services. In this context, the Cloud Integrator, a service-oriented middleware platform, provides an environment to facilitate the development and execution of multi-cloud applications. The applications are compositions of services, from different cloud platforms and, represented by abstract workflows. However, Cloud Integrator has some limitations, such as: (i) applications are locally executed; (ii) users cannot specify the application in terms of its inputs and outputs, and; (iii) experienced users cannot directly determine the concrete Web services that will perform the workflow. In order to deal with such limitations, this work proposes Cloud Stratus, a middleware platform that extends Cloud Integrator and offers different ways to specify an application: as an abstract workflow or a complete/partial execution flow. The platform enables the application deployment in cloud virtual machines, so that several users can access it through the Internet. It also supports the access and management of virtual machines in different cloud platforms and provides services monitoring mechanisms and assessment of QoS parameters. Cloud Stratus was validated through a case study that consists of an application that uses different services provided by different cloud platforms. Cloud Stratus was also evaluated through computing experiments that analyze the performance of its processes.

Assessing Surveillance Elements of the Zanzibar Malaria Elimination Program to Support Malaria Elimination in Zanzibar

Though significant progress has been made through control efforts in recent years, malaria remains a leading cause of morbidity and mortality throughout the world, with 3.2 billion people at risk of developing the disease. Zanzibar is currently pursuing malaria elimination through the Zanzibar Malaria Elimination Program (ZAMEP), and is working toward a goal of no locally acquired malaria cases by 2018. A comprehensive and well functioning malaria surveillance program is central to achieving this goal. Under ZAMEP’s current surveillance strategy, District Malaria Surveillance Officers (DMSOs) respond to malaria case notifications through the reactive case detection (RACD) system. Three malaria screening and treatment strategies are undertaken in response to this system, including household-level (HSaT), focal-level (FSaT), and mass-level (MSaT). Each strategy is triggered by a different case threshold and tests different-sized populations. The aims of this study were to (1) assess the cost effectiveness of three malaria screening and treatment strategies; (2) assess the timeliness and completeness of ZAMEP’s RACD system; (3) and qualitatively explore the roles of DMSOs.

Screening disposition and budget information for 2014 screening and treatment strategies was analyzed to determine prevalence rates in screened populations and the cost effectiveness of each strategy. Prevalence rates within the screened population varied by strategy: 6.1 percent in HSaT, 1.2 percent in FSaT, and 0.9 percent in MSaT. Of the various costing scenarios considering cost per person screened, MSaT was the most cost-effective, with costs ranging from $9.57 to $12.57 per person screened. Of the various costing scenarios considering cost per case detected, HSaT was the most cost-effective, at $385.51 per case detected.

Case data from 2013 through mid-2015 was used to assess the timeliness and completeness of the RACD system. The average number of RACD activities occurring within 48 hours of notification improved slightly between 2013 and the first half of 2015, from 90.7 percent to 93.1 percent. The average percentage of household members screened during RACD also increased over the same time period, from 84 percent in 2013 to 89.9 percent in the first half of 2015.

Interviews with twenty DMSOs were conducted to gain insights into the challenges to malaria elimination both from the health system and the community perspectives. Major themes discussed in the interviews include the need for additional training, inadequate information capture at health facility, resistance to household testing, transportation difficulties, inadequate personnel during the high transmission season, and community misinformation.

Zanzibar is now considered a low transmission setting, making elimination feasible, but also posing new challenges to achieving this goal. The findings of this study provide insight into how surveillance activities can be improved to support the goal of malaria elimination in Zanzibar. Key changes include reevaluating the use of MSaT activities, improving information capture at health facilities, hiring additional DMSOs during the high transmission season, and improving community communication.

Innovation in the pharmaceutical industry: New estimates of R&D costs.

The research and development costs of 106 randomly selected new drugs were obtained from a survey of 10 pharmaceutical firms. These data were used to estimate the average pre-tax cost of new drug and biologics development. The costs of compounds abandoned during testing were linked to the costs of compounds that obtained marketing approval. The estimated average out-of-pocket cost per approved new compound is $1395 million (2013 dollars). Capitalizing out-of-pocket costs to the point of marketing approval at a real discount rate of 10.5% yields a total pre-approval cost estimate of $2558 million (2013 dollars). When compared to the results of the previous study in this series, total capitalized costs were shown to have increased at an annual rate of 8.5% above general price inflation. Adding an estimate of post-approval R&D costs increases the cost estimate to $2870 million (2013 dollars).

Melhoria de procedimentos internos no laboratório do Instituto dos Vinhos do Douro e do Porto, I.P.

Este relatório foi elaborado no âmbito do estágio curricular realizado na Direção de Serviços Técnicos e de Certificação do Instituto dos Vinhos do Douro e do Porto, I.P. Teve como principal objetivo apresentar propostas de alteração de procedimentos internos do laboratório do Instituto dos Vinhos do Douro e do Porto, I.P., no sentido de reduzir o tempo de resposta às solicitações, procurando uma melhor rentabilização tanto de equipamentos como de recursos humanos. Para atingir tal objetivo, foi elaborado o diagnóstico da situação, com base na informação recolhida na Direção de Serviços Técnicos e de Certificação, incluindo os dados fornecidos pelo software GLAB que dá apoio às operações realizadas no laboratório do Instituto dos Vinhos do Douro e do Porto. Além disso, foi efetuado o acompanhamento do circuito das amostras de produtos vínicos desde a sua receção, à análise nos setores do laboratório e posterior validação dos resultados. Dado que o estudo da entrada de amostras no setor Análise Mineral foi maioritariamente inconclusivo, apurou-se o custo por análise na determinação do chumbo e, ainda, foi realizada uma simulação determinar a despesa necessária para reduzir o número de amostras analisadas de cada vez que se liga o equipamento. Foi ainda comparado o custo da determinação do parâmetro furfural, análise que tanto pode ser realizada no setor Cromatografia Gasosa como no setor Cromatografia Líquida. Para isso, foram utlizados vários testes estatísticos. Com base na avaliação efetuada foram identificadas e propostas as seguintes oportunidades de melhoria: - Automação de uma das atividades realizadas no setor Físico-Química I, atividade esta necessária à preparação das análises; - Contrabalançar a sazonalidade verificada na receção de amostras dos clientes com as amostras provenientes da Direção de Serviços de Fiscalização e Controlo; - Inserção de algumas variáveis no software GLAB. É de realçar que a proposta referente à automação de uma das atividades realizadas no setor Físico-Química foi implementada pelo IVDP. Foram, também, identificadas propostas de futuras investigações.

Effects of IFRS adoption on the financial statements of Nigerian listed entities: the case of oil and gas companies

On 28 July 2010, the Nigerian Federal Executive Council approved January 1, 2012 as the effective date for the convergence of Nigerian Statement of Accounting Standards (SAS) or Nigerian GAAP (NG-GAAP) with International Financial Reporting Standards (IFRS). By this pronouncement, all publicly listed companies and significant public interest entities in Nigeria were statutorily required to issue IFRS based financial statements for the year ended December, 2012. This study investigates the impact of the adoption of IFRS on the financial statements of Nigerian listed Oil and Gas entities using six years of data which covers three years before and three years after IFRS adoption in Nigeria and other African countries. First, the study evaluates the impact of IFRS adoption on the Exploration and Evaluation (E&E) expenditures of listed Oil and Gas companies. Second, it examines the impact of IFRS adoption on the provision for decommissioning of Oil and Gas installations and environmental rehabilitation expenditures. Third, the study analyses the impact of the adoption of IFRS on the average daily Crude Oil production cost per Barrel. Fourth, it examines the extent to which the adoption and implementation of IFRS affects the Key Performance Indicators (KPIs) of listed Oil and Gas companies. The study further explores the impact of IFRS adoption on the contractual relationships between Nigerian Government and Oil and Gas companies in terms of Joint Ventures (JVs) and Production Sharing Contracts (PSCs) as it relates to taxes, royalties, bonuses and Profit Oil Split. A Paired Samples t-test, Wilcoxon Signed Rank test and Gray’s (Gray, 1980) Index of Conservatism analyses were conducted simultaneously where the accounting numbers, financial ratios and industry specific performance measures of GAAP and IFRS were computed and analysed and the significance of the differences of the mean, median and Conservatism Index values were compared before and after IFRS adoption. Questionnaires were then administered to the key stakeholders in the adoption and implementation of IFRS and the responses collated and analysed. The results of the analyses reveal that most of the accounting numbers, financial ratios and industry specific performance measures examined changed significantly as a result of the transition from GAAP to IFRS. The E&E expenditures and the mean cost of Crude Oil production per barrel of Oil and Gas companies increased significantly. The GAAP values of inventories, GPM, ROA, Equity and TA were also significantly different from the IFRS values. However, the differences in the provision for decommissioning expenditures were not statistically significant. Gray’s (Gray, 1980) Conservatism Index shows that Oil and Gas companies were more conservative under GAAP when compared to the IFRS regime. The Questionnaire analyses reveal that IFRS based financial statements are of higher quality, easier to prepare and present to management and easier to compare among competitors across the Oil and Gas sector but slightly more difficult to audit compared to GAAP based financial statements. To my knowledge, this is the first empirical research to investigate the impact of IFRS adoption on the financial statements of listed Oil and Gas companies. The study will therefore make an enormous contribution to academic literature and body of knowledge and void the existing knowledge gap regarding the impact and implications of IFRS adoption on the financial statements of Oil and Gas companies.

Análise do custo-benefício de sistemas de cobertas em edificações comerciais para o clima de Natal/RN visando eficiência energética

This research consists in studying the influence of the various type of construction systems of roofs with their energy efficiency as well as on the cost benefit for the commercial buildings on the temperatures condition of the city of Natal/RN. The main goal of this research is to analyze the cost benefit of the construction systems of roofs available on the market, taking into consideration the energy efficiency of the commercial buildings artificially air conditioned in order to be used by the projectors and to be adequated to the temperatures condition of the city of Natal/RN. The method of valuation of the cost benefit of roof systems consists in six steps: Features and simulation of the reference building; Analyze of sensitivity; Analyzes, features and simulation of alternatives of roof construction systems; Analyze of the cost of implementation; Analyze of the benefits of the alternatives comparing to the base case; And finally the analyze of the cost benefit. The model type chosen as reference was stores with pre molded buildings and system of roof with fiber ciment and ceiling . The thermal results showed the influence of the roof system on the energy efficiency of the building. The Final results of the simulations of the alternatives comes to a conclusion that the absortance is the variable that presents the best cost benefit relation and the reduction on the thermal transmittance still has limitations because of the high cost

Factors affecting fertility in frozen-thawed boar sperm

Frozen-thawed boar sperm holds the potential to have an impact on the future of the swine industry. Utilization of this technology could improve a swine producer’s ability to access top-tier genetics from around the world, to improve efficiency, profitability, and the quality of product to meet consumer demands. Effective application of frozen-thawed sperm can help reduce the potential risk associated with devastating economic loss due to the spread of disease. Frozen storage of boar sperm also provides a safeguard in the event of disease outbreaks, as genetic material from paternal lines can be preserved and banked for repopulation purposes. Historically these benefits have been masked by reduction in fertility measures such as litter size. The reduced fertility results from the damage sustained by the sperm cell during cryopreservation. However, increased understanding of this damage has lead to improved cryopreservation methods, ultimately increasing post-thaw viability and fertility. Enhancements in breeding technology have also resulted in a better understanding of the AI methods required to achieve acceptable farrowing rates and litter size. Fertility following AI with frozen-thawed sperm is approaching that of liquid stored sperm, and producers may soon reap the benefits of this technology. This thesis will outline the current swine industry, opportunities for utilizing frozen-thawed sperm, the main components of sperm, why they are susceptible to damage, and current freezing and breeding practices. Objective 1 was to develop a cryopreservation protocol for our lab that resulted in consistent post-thaw motility ( ≥ 40%) that would eventually be used by Illinois boar studs for domestic and international sale of frozen sperm. Evaluation with both manual microscopy and CASA methods were conducted to verify quality. A preliminary breeding trial was then conducted to test the fertility of sperm frozen with this method. There were 41 ejaculates from 23 boars used for freezing. Sperm were frozen at 1.4x109 sperm/mL, averaging 55.61.1% (meanSE) motility, following thaw. The samples assessed were not different (P>0.05) in motility when compared with manual or CASA systems, and results were most reliable at a 1:40 sperm dilution. In the preliminary breeding trial, gilts (n=14) were inseminated with either a single (n=10) or double (n=4) AI using 1, 2, or 4x109 motile, frozen-thawed sperm. Overall, the resulting pregnancy rates averaged 71.4% and numbers of normal fetuses per litter averaged 15.51.3 per litter. A feasibility study for freezing cost per ejaculate was estimated at $275/ejaculate or $11/dose of frozen-thawed semen at standard doses of 5x109 total frozen-thawed sperm. This cost estimate did not include genetic value, fixed equipment costs, depreciation, or variable lab space fees. Objective 2 focused on the proper methods for breeding with frozen-thawed boar sperm to achieve fertility. Our hypothesis was that increased numbers of inseminations and increased numbers of motile frozen-thawed sperm would improve pregnancy rate and litter size. Results showed acceptable fertility at high sperm numbers, but also the optimal method for insemination with the lowest dose tested. Gilts (n=111) responded to synchronization methods and were bred with 1, 2, or 4x109 motile frozen-thawed sperm from six boars using a single AI at 32 h, or a double AI, with the first AI at 24 and 32 h following estrus. Ultrasound was conducted at 12 h intervals to estimate the time of ovulation. On day 32 of gestation, overall pregnancy rate (73%) and number of normal fetuses per litter (10.80.5) across all treatments did not differ, and were not affected by number of motile sperm, or the interaction of number of motile sperm and number of inseminations. However, the number of inseminations tended to affect (P=0.14) the number of normal fetuses. Litter size increased with a double AI compared to single AI. Multiple inseminations helped to allow insemination to occur close to ovulation in response to variation in the time of ovulation. Both pregnancy rate and number of normal fetuses were greater when the time of the AI at 32 h occurred closer to the estimated time of ovulation (P<0.05). In addition, other factors such as presence of an abnormal ovary at day 30 decreased (P<0.001) pregnancy rate, while boar affected number of normal fetuses (P<0.01). Analysis of our data using a fertility index revealed doses of 2x109 motile sperm with multiple AI can achieve acceptable fertility with use of less sperm, when compared to AI using 4x109 motile sperm. The methods described here will investigate the potential for improved fertility when using frozen-thawed sperm, while accounting for variation in time of ovulation.

MICROSCALE DIELECTRIC ANTI-REFLECTION COATINGS FOR PHOTOVOLTAICS

In order to power our planet for the next century, clean energy technologies need to be developed and deployed. Photovoltaic solar cells, which convert sunlight into electricity, are a clear option; however, they currently supply 0.1% of the US electricity due to the relatively high cost per Watt of generation. Thus, our goal is to create more power from a photovoltaic device, while simultaneously reducing its price. To accomplish this goal, we are creating new high efficiency anti-reflection coatings that allow more of the incident sunlight to be converted to electricity, using simple and inexpensive coating techniques that enable reduced manufacturing costs. Traditional anti-reflection coatings (consisting of thin layers of non-absorbing materials) rely on the destructive interference of the reflected light, causing more light to enter the device and subsequently get absorbed. While these coatings are used on nearly all commercial cells, they are wavelength dependent and are deposited using expensive processes that require elevated temperatures, which increase production cost and can be detrimental to some temperature sensitive solar cell materials. We are developing two new classes of anti-reflection coatings (ARCs) based on textured dielectric materials: (i) a transparent, flexible paper technology that relies on optical scattering and reduced refractive index contrast between the air and semiconductor and (ii) silicon dioxide (SiO2) nanosphere arrays that rely on collective optical resonances. Both techniques improve solar cell absorption and ultimately yield high efficiency, low cost devices. For the transparent paper-based ARCs, we have recently shown that they improve solar cell efficiencies for all angles of incident illumination reducing the need for costly tracking of the sun’s position. For a GaAs solar cell, we achieved a 24% improvement in the power conversion efficiency using this simple coating. Because the transparent paper is made from an earth abundant material (wood pulp) using an easy, inexpensive and scalable process, this type of ARC is an excellent candidate for future solar technologies. The coatings based on arrays of dielectric nanospheres also show excellent potential for inexpensive, high efficiency solar cells. The fabrication process is based on a Meyer rod rolling technique, which can be performed at room-temperature and applied to mass production, yielding a scalable and inexpensive manufacturing process. The deposited monolayer of SiO2 nanospheres, having a diameter of 500 nm on a bare Si wafer, leads to a significant increase in light absorption and a higher expected current density based on initial simulations, on the order of 15-20%. With application on a Si solar cell containing a traditional anti-reflection coating (Si3N4 thin-film), an additional increase in the spectral current density is observed, 5% beyond what a typical commercial device would achieve. Due to the coupling between the spheres originated from Whispering Gallery Modes (WGMs) inside each nanosphere, the incident light is strongly coupled into the high-index absorbing material, leading to increased light absorption. Furthermore, the SiO2 nanospheres scatter and diffract light in such a way that both the optical and electrical properties of the device have little dependence on incident angle, eliminating the need for solar tracking. Because the layer can be made with an easy, inexpensive, and scalable process, this anti-reflection coating is also an excellent candidate for replacing conventional technologies relying on complicated and expensive processes.

Proposta de um modelo de gestão de custos para pequenas propriedades rurais familiares com foco na tomada de decisão

This work was general-purpose, develop a proposal of a theoretical model of decisionmaking with a focus on management of small family farms costs, which enables support for decision making. And the following objectives: i) develop a structured methodology, which allows to form a literary basis to provide scientific support for the implementation of research; ii) develop based on the literature the dimensions and variables of the necessary models to propose an application and iii tooling) to implement the proposed model within the dimensions and variables, and validate every stage background and perform the necessary conclusions to verify the effectiveness of applied model. In terms of methodology, we used a structured methodology, which allowed forming a bibliographic portfolio of 29 articles, and through the research constructs developed, based on an existing model, an activity segmentation model for aid farmer of small family farms in the decision-making process with emphasis on cost management. The model was applied in six family farms in the South West region of Parana and Santa Catarina West. With regard to the search results, it was identified that the model can be applied to the specific context for which it was created. It was also possible to identify that the proposed model was valid and relevant to aid in the management of family farms by identifying, through the targeting of productive activities, investment priorities guided by the balance between managing costs and return activities. Moreover, possible to target the activities of six surveyed properties, demonstrating that the property 02, has the shape of more complex segmentation should be divided into three groups of activities, which can be conducted in parallel without any restrictions between activities. Other properties have the segmentation of the simplest activities, allowing viewing in this way that there are activities of groups that require prioritizing investments. Specifically the property 01 and 04 have the highest priority investment target groups, the most prominent activities of groups representing respectively 49.32% and 47.40%, which are represented by grain production activities on the property 01 and grain production, beef cattle and eggs on the property 04.

Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

BACKGROUND: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. METHODS: We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. RESULTS: A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from euro9509 to euro49,233 (reference year 2012). Estimated direct healthcare costs ranged from euro419 to euro10,688; direct non-healthcare costs ranged from euro7449 to euro37,451 and labour productivity losses ranged from euro0 to euro7259. The average annual cost per patient across all countries was estimated at euro31,390, out of which euro5646 accounted for direct health costs (18.0 %), euro23,483 accounted for direct non-healthcare costs (74.8 %), and euro2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. CONCLUSION: In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.