Miracle-dz/UniFAR-FTUs huggingface dataset:
Information Needs of People with Rare Diseases - What Information Do Patients and their Relatives Require?

Context: Even in today’s information age, finding comprehensive and valid information on rare diseases is difficult for those affected. A “National Action Plan for People with Rare Diseases” was adopted in Germany in 2013, calling for patient oriented information systems. However, little remains known about what information patients with rare diseases and their family members require. Objective: The study analyzed the information needs of patients living with rare diseases and of their relatives, to ensure a patient suitable information system. Methods: Semi-structured interviews revealed patients’ experiences regarding information needs and acquisition. The evaluation followed Mayring’s structured content analysis. Results: Interviews with 55 patients and 13 close relatives were conducted and analyzed. Patients and their relatives reported information needs ranging from medical and social law issues to practical questions helping to deal with the disease daily. Furthermore, there is demand for competent contacts for all disease-related matters, such as disease surveillance or support in submitting applications. Conclusion: People with rare diseases and their relatives have many information needs. We identified various topics that are relevant for patients with different conditions. To improve people’s knowledge about their diseases and enable access to specialized care, this information, if applicable, should be included in an information portal on rare diseases, enabling patients’ and families’ access to relevant information at a central point.
Hydrological modelling with TOPMODEL of Chingaza páramo, Colombia

Paramo ecosystems are located on the upper parts of the tropical mountains, below the snow line areas or in isolated areas where no glacier ecosystems occur. These ecosystems are considered important for their biodiversity, but mainly because they are permanent source of water for populations located at the upper and middle parts of the Andes. Recent studies indicate that ecosystems located at high altitudes, are more vulnerable to climate change and to changes in land use, which threatens the ecosystem services derived from them. There are very few studies in these ecosystems, within which, studies on the hydrological functioning are even scarcer, which seems to be related to their position in the top of the mountains and difficulties associated with the access to them. This implies that there is a need to create tools that allow us to study these ecosystems, overcoming the current difficulties. Hydrological TOPMODEL is used to investigate the hydrological functioning of the paramo of Chingaza, through a case study in La Chucua basin. For this, we calibrate and validate the model using two data sets of climate and the hydrology of the basin (climate and discharge from 2008 and 2009, respectively). Through the calibration procedure we obtain a high efficiency value of 0.76 model (coefficient Nash - Sutcliffe), which adequately represents the hydrological behavior of the paramo. Simulations with better adjustment between measured and predicted values of discharge, have low values of surface infiltration excess runoff, indicating high water storage capacity on the soils. This agrees with the predominance of subsurface flow in studied ecosystem, given the special characteristics of soils. Results also show the large influence of factors represented in the model (topography and soils), on water basin response to rainfall events. This is significant evidence of exceptional hydrological behavior of the paramos, mainly related to the presence of soil with high organic matter content. These results imply that TOPMODEL is a robust tool, able to represent in a precise manner the hydrological functioning of the basin La Chucua, and consequently it is expected that TOPMODEL can also represent hydrological conditions of Chingaza paramo.
Rules of Origin for Preferential Trading Arrangements: Implications for the ASEAN Free Trade Area of EU and U.S. Experience

With free trade areas (FTAs) under negotiation between Japan and the ASEAN Free Trade Area (AFTA) members and between the Republic of Korea and AFTA members, preferential market access will become more important in Asian regionalism. Protectionist pressures will likely increase through rules of origin, the natural outlet for these pressures. Based on the experience of the European Union and the United States with rules of origin, the authors argue that, should these FTAs follow in the footsteps of the EU and the U.S. and adopt similar rules of origin, trading partners in the region would incur unnecessary costs. Using EU trade under the Generalized System of Preferences with Africa, Caribbean, and Pacific partners, the authors estimate how the use of preferences would likely change if AFTA were to veer away from its current uniform rules of origin requiring a 40 percent local content rate. Depending on the sample used, a 10 percentage point reduction in the local value content requirement is estimated to increase the utilization rate of preferences by between 2.5 and 8.2 percentage points.
Unity of Consciousness Experience, Nature of the Observer and Current Physical Theory

He liked watching the glorious stars, thinking “there must be myriads of worlds out there”. Then one night he shifted his awareness toward and into himself. “By God,” he whispered, but only to himself, “there are myriads of worlds there, too! ” [1]. We in the western scientific culture have just begun, en masse, to explore our inner cosmos. Inner exploration has been an intellectual activity in the relatively recent past, has been associated with psychotherapy. Now inner exploration is beginning to enter the domain of emotional and spiritual development as well. Certainly, the nature of our inner being, the nature and structure of our consciousness, shapes and determines our concept of reality. This realization is having a vast impact on the world societies and us, as individuals. One manner in which we internally organize the mental, emotional and spiritual information we receive is by mental system of concepts or categories of information and their causal relations. We address the fundamental nature of conscious perception and how we comprehend existence. Techniques such as yoga, meditation, and processes of spiritual awakening have opened the horizons to the consideration of the attributes of the consciousness. There also appear to be clues as to the nature of consciousness in the structure of physical theory. In fact, the co-called internal journey and external validation system of science may be leading us onto a similar path of knowing.
Seasonality and Social Protection in Africa

2 Seasonality and ‘coping’ in four African countries 3 2.1 Seasonality 3 2.2 „Coping‟ 6 2.3 Seasonal food crises 8 2.3. 1 Ghana 8 2.3. 2 Namibia 10 2.3. 3 Malawi 11 2.3. 4 Ethiopia 15 2.4 Discussion 16
The Confidentiality – Integrity – Accessibility Triad into the Knowledge Security. A Reassessment from the Point of View of the Knowledge Contribution to Innovation

The necessity of (re)considering the three main faces of security mentioned in the title of the paper derives from the accumulation of the importance of the knowledge circulating in organizations, with the existence of numerous dangers and threats that target this knowledge, focusing on people as depositaries and users of knowledge. After a general presentation of the knowledge workers characteristics that can be analyzed as potential risks from the point of view of the confidentiality, integrity and accessibility of knowledge, the paper suggests some solutions that spin around the idea, that is, knowledge security is a human problem and not a technical one, and therefore it should be treated as such. The paper is mainly addressed to the managers interested in the use of knowledge in the activity of the organizations they lead, warning them about the sensitive points of the knowledge-related activities, with the dangers associated with them and suggesting them that the traditional informational security mechanisms are not sufficient, that they have to be reanalyzed and improved in knowledge security.
THE TACIT-EXPLICIT DYNAMIC IN LEARNING PROCESSES

In this report we present the methodology used in a study that investigated the tacitexplicit dynamic in learning processes. We have analyzed an episode related to a discussion about the difference between plane figures and spatial figures promoted by the teacher in her mathematics classroom (the students are aged 11 to 12). The data analysis was based on some aspects of Polanyi’s theory on tacit knowledge, and benefited from a variation of the ‘graph-theoretical model for the structure of an argument’ developed by Strom, Kemeny, Lehrer and Forman. The methodology employed exhibited a strong indication that the lack of correspondence between what the students are uttering and their original understandings is related to the tacitexplicit dimension.
Strong coupling scales in minimal massive gravity

Ghost-free massive gravity models generically have a strong coupling scale of $\Lambda_3 =(M_{\rm Pl} m^2)^{1/3}$. However, for one of these models - `minimal massive gravity' - it is not clear what this scale is in the subset of solutions with vanishing vector modes, since there are then no interactions at the scale $\Lambda_3$. We show that there are always scalar-tensor interactions at a scale arbitrarily close to $\Lambda_3$ around the Minkowski vacuum solution. This explicitly confirms and completes previous research establishing that $\Lambda_3$ effectively is the maximal strong coupling scale for all ghost-free (dRGT) massive gravity models (on Minkowski). In the process, we also revisit and clarify the construction of generic Lorentz-invariant massive gravity models, explicitly constructing an improved non-redundant expansion for these models.
Spectral element approach to wave propagation in uncertain beam structures

This paper presents a study on the uncertainty in material parameters of wave propagation responses in metallic beam structures. Special effort is made to quantify the effect of uncertainty in the wave propagation responses at high frequencies. Both the modulus of elasticity and the density are considered uncertain. The analysis is performed using a Monte Carlo simulation (MCS) under the spectral finite element method (SEM). The randomness in the material properties is characterized by three different distributions, the normal, Weibull and extreme value distributions. Their effect on wave propagation in beams is investigated. The numerical study shows that the CPU time taken for MCS under SEM is about 48 times less than for MCS under a conventional one-dimensional finite element environment for 50 kHz loading. The numerical results presented investigate effects of material uncertainties on high frequency modes. A study is performed on the usage of different beam theories and their uncertain responses due to dynamic impulse load. These studies show that even for a small coefficient of variation, significant changes in the above parameters are noticed. A number of interesting results are presented, showing the true effects of uncertainty response due to dynamic impulse load.
Harmonic Transponders: Performance and Challenges

Performance of a harmonic transponder strongly depends on the properties of the antenna and diode used, which makes finding a good combination of them very important. For a transponder with a fixed antenna geometry, the effect of different diodes is analyzed through electromagnetic simulations and theoretical calculations. The antenna used in the transponder is directly matched to the impedance properties of a particular diode. Effects of both detector and varactor diodes on the return loss characteristics of the antenna and the obtainable transponder response are observed. Criteria for selecting a suitable diode are given. Benefits and drawbacks of using different antenna matching techniques are discussed, and principal design steps are given both for transponders matched directly to the antenna and for transponders with external matching circuits.
Evaluation of the Efficacy of Medium Protein Diet, Turmeric and Arabic Gum on Chronic Renal Failure

Renal failure is accompanied by oxidative stress, which is caused by enhanced production of reactive oxygen species and impaired antioxidant defense. Turmeric and Arabic gum have antioxidant activities and medicinal properties. This study aimed to investigate the effect of two levels of turmeric and Arabic gum and their combination in the presence of medium protein diets on rats with chronic renal failure. A total of (54) rats weighting 200 ± 10g were fed on basal diet for 7 days for acclimatization. Rats divided into two main groups, the first main group (n=6) fed on basal diet for 8 weeks (Negative Control), while the second main group fed on basal diet containing2 % Larginine (arginine diet) for 4 weeks to induce chronic renal failure then the second main group divided into 8 subgroups (n =6) for 4 weeks as following: Subgroup (1): fed on arginine diet containing 14% protein and used as a positive control group. Subgroup (2): fed on arginine diet containing 7% protein, and used medium protein diet group (MPD). Subgroups (3 and 4): fed on MPDs containing 3% and 6% Arabic gum, respectively. Subgroups (5 and 6): fed on MPDs containing 1% and 2% turmeric, respectively. Subgroup (7): fed on MPD containing 3% Arabic gum and 1% turmeric. Subgroup (8): fed on MPD containing 6% Arabic gum and 2% turmeric. During the experimental period, rats were weighted weekly, feed intake and body weight gain were recorded. At the end of experimental period, rats were scarified; blood samples were collected centrifuged and frozen until analysis. Creatinine, urea nitrogen and uric acid, total protein, Na, K, AST, ALT, glucose and lipid profile were measured. Our results concluded that, all experimental diets had a positive effect on renal functions and the other complications resulted from CRF either alone or combined with medium protein diet especially with high levels. This effect may be due to antioxidant potential of turmeric and Arabic gum.
The Influence of Country of Origin Cues on Product Evaluation: Evidence from Swiss and German Consumers

This study aimed to investigate the influence of visual symbols on the perception and evaluation of two fictitious products as well as the effect of demographic characteristics (nationality) on consumers’ evaluations. A sample of 373 participants was split into two groups and two experimental conditions (products with Swiss symbols and products without Swiss symbols). One group of participants rated the packaging without a Swiss flag and the other one rated the same packaging with a Swiss flag. A semantic differential scale and the Self-Assessment Manikin (SAM) were used to assess attitudes toward the products. Results confirm that there are differences between the two independent groups and that nationality has an effect on product perception and evaluation. Visual symbols such as a country flag can lead to a better product perception and evaluation. Finally, implications for research are discussed.
Securing Rights to Livelihoods through Public Land Management: Opportunities and Challenges

Public land management has the potential to promote the right to resources of the landless and the land poor in Nepal. Experiences from three Terai districts in Western Nepal demonstrate that effective management of underutilized public land provides an important asset for communities not only to generate forest resources and supplement forest products but, more importantly, also to reduce vulnerability and generate livelihood opportunities for the landless and the land poor. It is argued that the lack of appropriate legislation covering the tenure rights discourages the poor from large-scale investment and restoration of public land. Furthermore, when it starts to generate income, powerful sections of communities might claim access to benefits derived from the land and if subsequent use rights legislation is unable to adequately embrace what has occurred during the initial period of protection and management conflicts may result. Examples are provided of pro-poor livelihood outcomes through public land management, which call for collective efforts for national and local legislation and policy instruments to protect the use rights of the poor groups engaged in public land management. Key words : public land, tenure, livelihoods, use rights, Terai, mobilization of local resources. Full text is available at the ForestAction website Journal of Forest and Livelihood 7(1) December 2008 pp.70-86
Information collection for fraud detection in P2P financial market

Fintech companies have been facing challenges from fraudulent behavior for a long time. Fraud rate in Chinese P2P financial market could go as high as 10%. It is crucial to collect sufficient information of the user as input to the anti-fraud process. Data collection framework for Fintech companies are different fro m conventional internet firms. With individual-based crawling request , we need to deal with new challenges negligible elsewhere . In this paper , we give an outline of how we collect data from the web to facilitate our anti-fraud process. We also overview the challenges and solutions to our problems. Our team at HC Financial Service Group is one of the few companies that are capable of developing full-fledged crawlers on our own.
Interactive comment on “Gauging the ungauged basin: how many discharge measurements are needed?” by J. Seibert and K. Beven

We appreciate this comment which for brought two related papers to our attention. These studies also clearly showed that a limited number of streamflow measurements can be very useful for constraining models. Compared to our study, the previous studies had the advantage of including many more catchments from different regions. On the other hand, concentrating on fewer catchments allowed us to test these in more detail (e.g., gaugings during different years). A major new contribution of our study is the use of a Monte Carlo approach resulting in an ensemble mean rather than calibration of a single parameter set.
The Effects of State and Federal Mental Health Parity Laws on Working Time

This paper provides new empirical evidence on the impacts of state and federal mental health parity laws on related labor market outcomes, particularly working time. Implemented in the last two decades, these policies aim to eliminate differences in mental and physical health benefits among group health plans. The mandated benefits for mental health drive up the costs of providing health insurance substantially. In response, employers may avoid hiring more full-time workers, whose compensation includes health insurance, by increasing working time per worker and reliance on part-time employment. Employees may also have an incentive to increase their labor supply to qualify for the benefits. Using individual-level data from the Current Population Survey and exploiting policy variation by state and year, I find state parity laws increase average weeks worked by 1.4 percent. Since self-insured firms are exempt from state regulations, parity is estimated to have nearly twice as large an effect on small firms as it does on large firms. Moreover, I study two federal parity laws and find the more comprehensive one is associated with 1.7 percent more weeks worked. Overall, there is no substantial evidence that parity laws significantly affect hours worked and prevalence of coverage.
GENETIC DIVERSITY ANALYSIS OF TWO DESERT BIGHORN SHEEP (Ovis canadensis mexicana) POPULATION IN MEXICO [ANALISIS DE LA DIVERSIDAD GENETICA DE DOS POBLACIONES DE BORREGO CIMARRON (Ovis canadensis mexicana) EN MEXICO]

1 Universidad del Papaloapan. Av. Ferrocarril s/n, Col. Ciudad Universitaria, C.P. 68400, Loma Bonita Oaxaca, México. Tel. (281) 872-22-37, ext. 223, *E-mail: joeabad@hotmail.com, jabad@unpa.edu. mx; 2 Centro de Biotecnología Genómica, Instituto Politécnico Nacional. Blvd. del Maestro S/N, Col. Narciso Mendoza C.P. 88710, Reynosa, Tamaulipas, México. Tel. +52 (899) 92436-27. E-mail: asifuentes@ipn.mx; 3 Facultad de Zootecnia, Universidad Autónoma de Chihuahua. Periférico R. Almada Km. 1.5. C.P. 31031, Chihuahua, Chih. México. (614) 434 03 45. E-mails: alafon@uach.mx, jagual2208@hotmail.com, evegonzal@uach.mx, jaortega@uach.mx. ; 4 Universidad Autónoma Chapingo. Unidad Regional Universitaria de Zonas Áridas. Bermejillo, Durango, México. (872) 77-6-01-60, cmeza2020@hotmail.com *Corresponding author
A Survey : Searching Techniques 1 Miss

In day to day life as we are using internet mostly for to search every one want answer within short time. Any user who doesn’t know how to search can get result by simply typing related words in search engine. They even know which technics are used to search similar data on web. There are many searching technics like Instant search, Type-Ahead Search, Text Proximity Search, Fuzzy Keyword Search Auto-Completion and many more are also available. This paper is about how all mentioned technics works to retrieves results quick and accurate.
Firm-Specific Labor and Firm-Specific Capital: Implications for the Euro-Data New Phillips Curve

Standard GMM estimates of the New Phillips curve on euro-area data yield degrees of nominal rigidity that are not in accordance with recent microeconomic evidence. This paper studies whether similar conclusions are reached in a richer model where price setters face firm-specific capital and/or firm-specific labor. We find that combining these elements or considering firm-specific labor alone leads to statistically significant and economically reasonable estimates of the degree of nominal rigidity. In contrast, ignoring firm-specific labor yields estimates that are not supported by microeconomic evidence.
Vertex and Edge Residual Mean Distances : New Resilience Measures for Telecommunication Networks

Any telecommunication network is subject to a node or link failure at any given time. Such a failure may impact the quality of the services provided by the network, and therefore the network resilience. In this paper, we define two new measures for evaluating network resilience with respect to a node or link failure: the vertex residual mean distance and the edge residual mean distance, in short RMDs. The RMDs are graph invariants which measure the impact of the removal of an arbitrary vertex/edge on the mean distance of the original graph. Some authors investigated different graph invariants before and after a vertex or an edge removal. However, to our knowledge, none of them incorporated graph invariant with vertex/edge removal. We study the RMDs on diverse graph classes, such as cycle graphs, complete graphs, twin graphs and k-geodetically connected graphs. We establish tight lower bound of the RMDs and graphs reaching them, as well as non-tight upper bound of the RMDs. Moreover, we conjecture tight upper bounds of the RMDs and graphs reaching them. From our results, we point out a family of graphs, i.e. twin graphs, that minimize the vertex residual mean distance and for which the edge residual mean distance is almost as small as that of the complete graph. Notice that each twin graph on n vertices has only 2n − 4 edges, compared to the n(n− 1)/2 edges of the complete graph. Thus, twin graphs require relatively few edges to provide great levels of resilience. Since, in telecommunications, the number of edges is related to the cost of deploying the network, these results make it interesting to apply twin graphs for the physical topology design of telecommunication networks.