Background Understanding the natural history of rare bone and mineral conditions is essential for improving clinical practice and the development of new diagnostics and therapeutics. Recruitment... Show moreBackground Understanding the natural history of rare bone and mineral conditions is essential for improving clinical practice and the development of new diagnostics and therapeutics. Recruitment and long-term participation in registries are key challenges for researchers. Methods To understand the user needs, the European Reference Network on Rare Bone Diseases (ERN BOND) and European Patient Advocacy Groups developed and implemented a multinational survey about the patient's preferred database content and functionality through an iterative consensus process. The survey was disseminated by national and international patient groups and healthcare professionals. The findings were analysed using descriptive statistics and multivariate regression. Results There were 493 eligible responses from 378 adults, 15 children and 100 parents, guardians or carers (PGC) across 22 rare bone and mineral conditions. Osteogenesis imperfecta constituted 53.4% of responses. Contents related to improving treatment and medical services scored the highest and contents about anxiety and socializing scored less highly. Additional content was recommended by 205 respondents. Respondents preferred data entry by their Healthcare Provider (HCP). However, less than 50% of adults received followup from their specialist HCP at least annually and 29% were followed up as needed. Conclusions This survey of individuals, their family, guardians and carers has prioritised the key components for an EU-based rare bone and mineral condition research database. The survey highlights issues around collecting psychosocial impacts as well as measures of HCP trust. The survey demonstrated that using only specialist centre visits for data collection, while preferred by patients, will miss a substantial number of individuals, limiting generalisability. Combined HCP and patient platforms will be required to collect representative and complete natural history data for this patient group. Show less
Public knowledge of both the mission and the powers of the National Intelligence Centre (CNI) are studied in this paper through a survey of 2888 students from 30 universities in Spain. The results... Show morePublic knowledge of both the mission and the powers of the National Intelligence Centre (CNI) are studied in this paper through a survey of 2888 students from 30 universities in Spain. The results confirmed that university students were unaware of the CNI’s mission and powers and that their vision of the CNI was of a Law Enforcement Agency with mainly counter-terrorism functions. Their knowledge differed according to their sociodemographic background and political variables. Both the implications for further scientific debate and the policies of intelligence agencies toward openness are discussed. Show less
Background: In patients with active cancer and atrial fibrillation (AF) anticoagulation, thrombotic and bleeding risk still entail uncertainty.Aim: We explored the results of an international... Show moreBackground: In patients with active cancer and atrial fibrillation (AF) anticoagulation, thrombotic and bleeding risk still entail uncertainty.Aim: We explored the results of an international survey examining the knowledge and behaviours of a large group of physicians.Methods and results: A web-based survey was completed by 960 physicians (82.4% cardiologists, 75.5% from Europe). Among the currently available anticoagulants for stroke prevention in patients with active cancer, direct oral anticoagulants (DOACs) were preferred by 62.6%, with lower values for low molecular weight heparin (LMWH) (24.1%) and for warfarin (only 7.3%). About 46% of respondents considered that DOACs should be used in all types of cancers except in non-operable gastrointestinal cancers. The lack of controlled studies on bleeding risk (33.5% of respondents) and the risk of drug interactions (31.5%) were perceived as problematic issues associated with use of anticoagulants in cancer. The decision on anticoagulation involved a cardiologist in 27.8% of cases, a cardiologist and an oncologist in 41.1%, and a team approach in 21.6%. The patient also was involved in decision-making, according to similar to 60% of the respondents. For risk stratification, use of CHA2DS2-VASc and HAS-BLED scores was considered appropriate, although not specifically validated in cancer patients, by 66.7% and 56.4%, respectively.Conclusion: This survey highlights that management of anticoagulation in patients with AF and active cancer is challenging, with substantial heterogeneity in therapeutic choices. Direct oral anticoagulants seems having an emerging role but still the use of LMWH remains substantial, despite the absence of long-term data on thromboprophylaxis in AF. Show less
Purpose: To assess current perceptions, practices and education needs pertaining to artificial intelligence (AI) in the medical physics field.Methods: A web-based survey was distributed to the... Show morePurpose: To assess current perceptions, practices and education needs pertaining to artificial intelligence (AI) in the medical physics field.Methods: A web-based survey was distributed to the European Federation of Organizations for Medical Physics (EFOMP) through social media and email membership list. The survey included questions about education, personal knowledge, needs, research and professionalism around AI in medical physics. Demographics information were also collected. Responses were stratified and analysed by gender, type of institution and years of experience in medical physics. Statistical significance (p < 0.05) was assessed using paired t-test.Results: 219 people from 31 countries took part in the survey. 81% (n = 177) of participants agreed that AI will improve the daily work of Medical Physics Experts (MPEs) and 88% (n = 193) of respondents expressed the need for MPEs of specific training on AI. The average level of AI knowledge among participants was 2.3 +/- 1.0 (mean +/- standard deviation) in a 1-to-5 scale and 96% (n = 210) of participants showed interest in improving their AI skills. A significantly lower AI knowledge was observed for female participants (2.0 +/- 1.0), compared to male responders (2.4 +/- 1.0). 64% of participants indicated that they are not involved in AI projects. The percentage of female leading AI projects was significantly lower than the male counterparts (3% vs 19%).Conclusions: AI was perceived as a positive resource to support MPEs in their daily tasks. Participants demonstrated a strong interest in improving their current AI-related skills, enhancing the need for dedicated training for MPEs. Show less
