How Building Information Modelling software (BIM) is being used in the Architectural and Engineering (AE) industry and how the use of this software is impacted by the AE industries own understanding of BIM - A South East Queensland (SEQ) Perspective

Building Information Modelling (BIM) has been at the forefront of the Architectural and Engineering (AE) industry for nearly 2 decades. Traditionally, the BIM ‘dimension’ and ‘maturity’ levels relating to the software have been identified as the most utilised aspects to measure the software use. These terms describe using BIM-enabled software to create data that can be used, moved and changed for the lifecycle of a building or structure, and are benchmarks for the capability of the AE industry’s use of BIM. However, a greater understanding of how the AE industry is using design software is required, particularly in relation to how the use of BIM software relates to the user’s own understanding of BIM software as a management tool, rather than a modelling tool. This research will better idenitfy the extent of BIM use in design software across the AE industry in SEQ. This could help further the understanding of BIM use, aiding the discovery of better pathways for BIM implementation across the AE industry. It may also help to identify a correlation between user understanding of BIM generally, and how the design software is being used. This is an important step to help governments or BIM enablers faciliate a BIM environment. These groups aim to produce a common standard that can be utilised by all within this industry to facliitate a platform that could make information sharing, collaboration and performing their roles easier. An in-depth literature review of preceding research into BIM was used to develop a questionnaire that was delivered to the AE industry in SEQ. The questionnaire used a scaled (Likert Scale) questioning for quantitative assessment followed by a combination of multiple-choice with optional short answer qualitative type questions. These questions were used to gauge the level of BIM design software use. The data suggests that Small and Medium Enterprise businesses (SME) demonstrate slower levels of BIM software development and use. This suggests that the functionality of BIM software can be greater utilised and further, that BIM can be diversified to include a greater range of users, BIM will remain in its infancy until the opportunity to implement it across all levels the AE industry becomes a reality. The research also suggested that Government mandates of BIM would be important to furthering the use of BIM across the local AE industry, however, it was found that participants felt that mandates should be implemented cautiously and with sufficient industry guidance, to not do so may to some industry sectors force unachievable goals which could be damaging to the adoption of BIM and how BIM is being use in the industry. Further research into the potential to facilitate design aspects such as engineering or architectural principals and standards checking within a BIM software framework may expand the use of BIM within the industry

Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project

Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. Objective: To evaluate unmet needs from the perspective of HS patients. Methods: Prospective multinational survey of patients between October 2017 and July 2018. Results: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. Limitations: Data were self-reported. Patients with more severe disease may have been selected. Conclusion: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address. © 2019 American Academy of Dermatology, Inc

Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project

Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. Objective: To evaluate unmet needs from the perspective of HS patients. Methods: Prospective multinational survey of patients between October 2017 and July 2018. Results: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4% [n = 798]) rated recent HS-related pain as moderate or higher, and 4.5% described recent pain to be the worst possible. Access to dermatology was rated as difficult by 37.0% (n = 481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n = 563), and 14.5% were disabled due to disease. Patients reported a high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.6%, respectively. Limitations: Data were self-reported. Patients with more severe disease may have been selected. Conclusion: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address

Evaluating Patients\u27 Unmet Needs in Hidradenitis Suppurativa: results from the Global VOICE project

BACKGROUND: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. OBJECTIVE: To evaluate unmet needs from the perspective of HS patients. METHODS: Prospective multinational survey of patients between October, 2017 and July, 2018. RESULTS: Majority (63.7%, n=827) visited a physician ≥5 times prior to receiving formal HS diagnosis. Mean delay in diagnosis was 10.2 years (+/- 8.9 years). Patients experienced flare daily, weekly, or monthly in 23.0%, 29.8%, and 31.1%, respectively. Most (61.4%, n=798) rated recent HS-related pain as moderate or higher, while 4.5% described recent pain to be worst possible. Access to dermatology was rated as difficult by 37.0% (n=481). Patients reported visiting the emergency department and hospital ≥5 times for symptoms in 18.3% and 12.5%, respectively. An extreme impact on life was reported by 43.3% (n=563), and 14.5% were disabled due to disease. Patients reported high frequency of comorbidities, most commonly mood disorders. Patients were dissatisfied with medical or procedural treatments in 45.9% and 34.5%, respectively. LIMITATIONS: Data was self-reported. Patients with more severe disease may have been selected. CONCLUSIONS: HS patients have identified several critical unmet needs that will require stakeholder collaboration to meaningfully address

Updated report on tools to measure outcomes of clinical trials in fragile X syndrome

Abstract Objective Fragile X syndrome (FXS) has been the neurodevelopmental disorder with the most active translation of preclinical breakthroughs into clinical trials. This process has led to a critical assessment of outcome measures, which resulted in a comprehensive review published in 2013. Nevertheless, the disappointing outcome of several recent phase III drug trials in FXS, and parallel efforts at evaluating behavioral endpoints for trials in autism spectrum disorder (ASD), has emphasized the need for re-assessing outcome measures and revising recommendations for FXS. Methods After performing an extensive database search (PubMed, Food and Drug Administration (FDA)/National Institutes of Health (NIH)’s www.ClinicalTrials.gov , etc.) to determine progress since 2013, members of the Working Groups who published the 2013 Report evaluated the available outcome measures for FXS and related neurodevelopmental disorders using the COSMIN grading system of levels of evidence. The latter has also been applied to a British survey of endpoints for ASD. In addition, we also generated an informal classification of outcome measures for use in FXS intervention studies as instruments appropriate to detect shorter- or longer-term changes. Results To date, a total of 22 double-blind controlled clinical trials in FXS have been identified through www.ClinicalTrials.gov and an extensive literature search. The vast majority of these FDA/NIH-registered clinical trials has been completed between 2008 and 2015 and has targeted the core excitatory/inhibitory imbalance present in FXS and other neurodevelopmental disorders. Limited data exist on reliability and validity for most tools used to measure cognitive, behavioral, and other problems in FXS in these trials and other studies. Overall, evidence for most tools supports a moderate tool quality grading. Data on sensitivity to treatment, currently under evaluation, could improve ratings for some cognitive and behavioral tools. Some progress has also been made at identifying promising biomarkers, mainly on blood-based and neurophysiological measures. Conclusion Despite the tangible progress in implementing clinical trials in FXS, the increasing data on measurement properties of endpoints, and the ongoing process of new tool development, the vast majority of outcome measures are at the moderate quality level with limited information on reliability, validity, and sensitivity to treatment. This situation is not unique to FXS, since reviews of endpoints for ASD have arrived at similar conclusions. These findings, in conjunction with the predominance of parent-based measures particularly in the behavioral domain, indicate that endpoint development in FXS needs to continue with an emphasis on more objective measures (observational, direct testing, biomarkers) that reflect meaningful improvements in quality of life. A major continuous challenge is the development of measurement tools concurrently with testing drug safety and efficacy in clinical trials