Development and Validation of The SMAP Enhanced Passive Soil Moisture Product

Since the beginning of its routine science operation in March 2015, the NASA SMAP observatory has been returning interference-mitigated brightness temperature observations at L-band (1.41 GHz) frequency from space. The resulting data enable frequent global mapping of soil moisture with a retrieval uncertainty below 0.040 cu m/cu m at a 36 km spatial scale. This paper describes the development and validation of an enhanced version of the current standard soil moisture product. Compared with the standard product that is posted on a 36 km grid, the new enhanced product is posted on a 9 km grid. Derived from the same time-ordered brightness temperature observations that feed the current standard passive soil moisture product, the enhanced passive soil moisture product leverages on the Backus-Gilbert optimal interpolation technique that more fully utilizes the additional information from the original radiometer observations to achieve global mapping of soil moisture with enhanced clarity. The resulting enhanced soil moisture product was assessed using long-term in situ soil moisture observations from core validation sites located in diverse biomes and was found to exhibit an average retrieval uncertainty below 0.040 cu m/cu m. As of December 2016, the enhanced soil moisture product has been made available to the public from the NASA Distributed Active Archive Center at the National Snow and Ice Data Center

Treatment Patterns and Use of Resources in Patients With Tuberous Sclerosis Complex: Insights From the TOSCA Registry

Tuberous Sclerosis Complex (TSC) is a rare autosomal-dominant disorder caused by mutations in the TSC1 or TSC2 genes. Patients with TSC may suffer from a wide range of clinical manifestations; however, the burden of TSC and its impact on healthcare resources needed for its management remain unknown. Besides, the use of resources might vary across countries depending on the country-specific clinical practice. The aim of this paper is to describe the use of TSC-related resources and treatment patterns within the TOSCA registry. A total of 2,214 patients with TSC from 31 countries were enrolled and had a follow-up of up to 5 years. A search was conducted to identify the variables containing both medical and non-medical resource use information within TOSCA. This search was performed both at the level of the core project as well as at the level of the research projects on epilepsy, subependymal giant cell astrocytoma (SEGA), lymphangioleiomyomatosis (LAM), and renal angiomyolipoma (rAML) taking into account the timepoints of the study, age groups, and countries. Data from the quality of life (QoL) research project were analyzed by type of visit and age at enrollment. Treatments varied greatly depending on the clinical manifestation, timepoint in the study, and age groups. GAB Aergics were the most prescribed drugs for epilepsy, and mTOR inhibitors are dramatically replacing surgery in patients with SEGA, despite current recommendations proposing both treatment options. mTOR inhibitors are also becoming common treatments in rAML and LAM patients. Forty-two out of the 143 patients (29.4%) who participated in the QoL research project reported inpatient stays over the last year. Data from non-medical resource use showed the critical impact of TSC on job status and capacity. Disability allowances were more common in children than adults (51.1% vs 38.2%). Psychological counseling, social services and social worker services were needed by <15% of the patients, regardless of age. The long-term nature, together with the variability in its clinical manifestations, makes TSC a complex and resource-demanding disease. The present study shows a comprehensive picture of the resource use implications of TSC

Natural clusters of tuberous sclerosis complex (TSC)-associated neuropsychiatric disorders (TAND): new findings from the TOSCA TAND research project.

BACKGROUND: Tuberous sclerosis complex (TSC)-associated neuropsychiatric disorders (TAND) have unique, individual patterns that pose significant challenges for diagnosis, psycho-education, and intervention planning. A recent study suggested that it may be feasible to use TAND Checklist data and data-driven methods to generate natural TAND clusters. However, the study had a small sample size and data from only two countries. Here, we investigated the replicability of identifying natural TAND clusters from a larger and more diverse sample from the TOSCA study. METHODS: As part of the TOSCA international TSC registry study, this embedded research project collected TAND Checklist data from individuals with TSC. Correlation coefficients were calculated for TAND variables to generate a correlation matrix. Hierarchical cluster and factor analysis methods were used for data reduction and identification of natural TAND clusters. RESULTS: A total of 85 individuals with TSC (female:male, 40:45) from 7 countries were enrolled. Cluster analysis grouped the TAND variables into 6 clusters: a scholastic cluster (reading, writing, spelling, mathematics, visuo-spatial difficulties, disorientation), a hyperactive/impulsive cluster (hyperactivity, impulsivity, self-injurious behavior), a mood/anxiety cluster (anxiety, depressed mood, sleep difficulties, shyness), a neuropsychological cluster (attention/concentration difficulties, memory, attention, dual/multi-tasking, executive skills deficits), a dysregulated behavior cluster (mood swings, aggressive outbursts, temper tantrums), and an autism spectrum disorder (ASD)-like cluster (delayed language, poor eye contact, repetitive behaviors, unusual use of language, inflexibility, difficulties associated with eating). The natural clusters mapped reasonably well onto the six-factor solution generated. Comparison between cluster and factor solutions from this study and the earlier feasibility study showed significant similarity, particularly in cluster solutions. CONCLUSIONS: Results from this TOSCA research project in an independent international data set showed that the combination of cluster analysis and factor analysis may be able to identify clinically meaningful natural TAND clusters. Findings were remarkably similar to those identified in the earlier feasibility study, supporting the potential robustness of these natural TAND clusters. Further steps should include examination of larger samples, investigation of internal consistency, and evaluation of the robustness of the proposed natural clusters

Users’ design feedback in usability evaluation: a literature review

Abstract As part of usability evaluation, users may be invited to offer their reflections on the system being evaluated. Such reflections may concern the system’s suitability for its context of use, usability problem predictions, and design suggestions. We term the data resulting from such reflections users’ design feedback. Gathering users’ design feedback as part of usability evaluation may be seen as controversial, and the current knowledge on users’ design feedback is fragmented. To mitigate this, we have conducted a literature review. The review provides an overview of the benefits and limitations of users’ design feedback in usability evaluations. Following an extensive search process, 31 research papers were identified as relevant and analysed. Users’ design feedback is gathered for a number of distinct purposes: to support budget approaches to usability testing, to expand on interaction data from usability testing, to provide insight into usability problems in users’ everyday context, and to benefit from users’ knowledge and creativity. Evaluation findings based on users’ design feedback can be qualitatively different from, and hence complement, findings based on other types of evaluation data. Furthermore, findings based on users’ design feedback can hold acceptable validity, though the thoroughness of such findings may be questioned. Finally, findings from users’ design feedback may have substantial impact in the downstream development process. Four practical implications are highlighted, and three directions for future research are suggested

Newly Diagnosed and Growing Subependymal Giant Cell Astrocytoma in Adults With Tuberous Sclerosis Complex: Results From the International TOSCA Study

The onset and growth of subependymal giant cell astrocytoma (SEGA) in tuberous sclerosis complex (TSC) typically occurs in childhood. There is minimal information on SEGA evolution in adults with TSC. Of 2,211 patients enrolled in TOSCA, 220 of the 803 adults (27.4%) ever had a SEGA. Of 186 patients with SEGA still ongoing in adulthood, 153 (82.3%) remained asymptomatic, and 33 (17.7%) were reported to ever have developed symptoms related to SEGA growth. SEGA growth since the previous scan was reported in 39 of the 186 adults (21%) with ongoing SEGA. All but one patient with growing SEGA had mutations in TSC2. Fourteen adults (2.4%) were newly diagnosed with SEGA during follow-up, and majority had mutations in TSC2. Our findings suggest that surveillance for new or growing SEGA is warranted also in adulthood, particularly in patients with mutations in TSC2

Clinical Characteristics of Subependymal Giant Cell Astrocytoma in Tuberous Sclerosis Complex

BACKGROUND: This study evaluated the characteristics of subependymal giant cell astrocytoma (SEGA) in patients with tuberous sclerosis complex (TSC) entered into the TuberOus SClerosis registry to increase disease Awareness (TOSCA). METHODS: The study was conducted at 170 sites across 31 countries. Data from patients of any age with a documented clinical visit for TSC in the 12 months preceding enrollment or those newly diagnosed with TSC were entered. RESULTS: SEGA were reported in 554 of 2,216 patients (25%). Median age at diagnosis of SEGA was 8 years (range, 18 years. SEGA were symptomatic in 42.1% of patients. Symptoms included increased seizure frequency (15.8%), behavioural disturbance (11.9%), and regression/loss of cognitive skills (9.9%), in addition to those typically associated with increased intracranial pressure. SEGA were significantly more frequent in patients with TSC2 compared to TSC1 variants (33.7 vs. 13.2 %, p < 0.0001). Main treatment modalities included surgery (59.6%) and mammalian target of rapamycin (mTOR) inhibitors (49%). CONCLUSIONS: Although SEGA diagnosis and growth typically occurs during childhood, SEGA can occur and grow in both infants and adults

Increasing the impact of usability work in software development

A key challenge when producing usable and useful software is the lack of impact of usability work on software development. We aim at developing a more coherent and realistic understanding of this challenge and the possibilities of how to increase the impact from usability work when developing high quality software products. We present a workshop gathering usability practitioners and researchers in order to establish and thoroughly discuss a corpus of case studies covering a broad range of usability practices in software development. The result of the workshop will be summarized in a conference paper and an international recognized scientific publisher will publish the case studies

Usability Evaluation in Software Development Practice

Part 1: Long and Short PapersInternational audienceBrief description of the topic: Usability evaluation is explored by comparing the effectiveness of using different evaluation methods and by studying how usability evaluation is conducted by practitioners.Research area. Usability, evaluation, agile development, Scrum, practice

Current and emerging systemic treatments targeting the neural system for chronic pruritus

Pruritus is a debilitating symptom that significantly affects the quality of life of patients who suffer from it. Many current and emerging systemic treatments targeting the neural system have been successful in treating itch of various underlying etiologies. A complete search of the PUBMED and Google Scholar databases was completed and literature pertinent to current and emerging systemic anti-pruritic drugs which target the neural system was compiled. The purpose of this review is to give the reader with an overview of the current and emerging systemic therapeutic options which target the neural system for chronic pruritus. The authors then provide the reader with their expert perspectives on the future of these therapies. Exciting new anti-pruritic therapies targeting the neural system which show promise include NK-1 inhibitors, opioid receptor modulators, and drugs targeting specific itch receptors such as Mrgpr, Na v 1.7, and PAR2, as well as selective GABA modulators. Future studies should be conducted in order to fully understand these exciting therapeutic options