Development and Implementation of the AIDA International Registry for Patients With Undifferentiated Systemic AutoInflammatory Diseases

Objective: This paper points out the design, development and deployment of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to pediatric and adult patients affected by Undifferentiated Systemic AutoInflammatory Diseases (USAIDs). Methods: This is an electronic registry employed for real-world data collection about demographics, clinical, laboratory, instrumental and socioeconomic data of USAIDs patients. Data recruitment, based on the Research Electronic Data Capture (REDCap) tool, is designed to obtain standardized information for real-life research. The instrument is endowed with flexibility, and it could change over time according to the scientific acquisitions and potentially communicate with other similar tools; this platform ensures security, data quality and data governance. Results: The focus of the AIDA project is connecting physicians and researchers from all over the world to shed a new light on heterogeneous rare diseases. Since its birth, 110 centers from 23 countries and 4 continents have joined the AIDA project. Fifty-four centers have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 179 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry is collecting baseline and follow-up data using 3,769 fields organized into 23 instruments, which include demographics, history, symptoms, trigger/risk factors, therapies, and healthcare information access for USAIDs patients. Conclusions: The development of the AIDA International Registry for USAIDs patients will facilitate the online collection of real standardized data, connecting a worldwide group of researchers: the Registry constitutes an international multicentre observational groundwork aimed at increasing the patient cohort of USAIDs in order to improve our knowledge of this peculiar cluster of autoinflammatory diseases

Risk for cancer development in familial Mediterranean fever and associated predisposing factors: an ambidirectional cohort study from the international AIDA Network registries

Objective: Inflammation has been associated with an increased risk for cancer development, while innate immune system activation could counteract the risk for malignancies. Familial Mediterranean fever (FMF) is a severe systemic inflammatory condition and also represents the archetype of innate immunity deregulation. Therefore, the aim of this study is to investigate the risk for cancer development in FMF. Methods: The risk ratio (RR) for malignancies was separately compared between FMF patients and fibromyalgia subjects, Still's disease patients and Beh & ccedil;et's disease patients. Clinical variables associated with cancer development in FMF patients were searched through binary logistic regression. Results: 580 FMF patients and 102 fibromyalgia subjects, 1012 Beh & ccedil;et's disease patients and 497 Still's disease patients were enrolled. The RR for the occurrence of malignant neoplasms was 0.26 (95% Confidence Interval [CI.] 0.10-0.73, p=0.006) in patients with FMF compared to fibromyalgia subjects; the RR for the occurrence of malignant cancer was 0.51 (95% CI. 0.23-1.16, p=0.10) in FMF compared to Still's disease and 0.60 (95% CI. 0.29-1.28, p=0.18) in FMF compared to Beh & ccedil;et's disease. At logistic regression, the risk of occurrence of malignant neoplasms in FMF patients was associated with the age at disease onset (beta 1 = 0.039, 95% CI. 0.001-0.071, p=0.02), the age at the diagnosis (beta 1 = 0.048, 95% CI. 0.039-0.085, p=0.006), the age at the enrolment (beta 1 = 0.05, 95% CI. 0.007-0.068, p=0.01), the number of attacks per year (beta 1 = 0.011, 95% CI. 0.001- 0.019, p=0.008), the use of biotechnological agents (beta 1 = 1.77, 95% CI. 0.43-3.19, p=0.009), the use of anti-IL-1 agents (beta 1 = 2.089, 95% CI. 0.7-3.5, p=0.002).Conclusions: The risk for cancer is reduced in Caucasic FMF patients; however, when malignant neoplasms occur, this is more frequent in FMF cases suffering from a severe disease phenotype and presenting a colchicine-resistant disease

Risk for cancer development in familial Mediterranean fever and associated predisposing factors: an ambidirectional cohort study from the international AIDA Network registries

Objective: Inflammation has been associated with an increased risk for cancer development, while innate immune system activation could counteract the risk for malignancies. Familial Mediterranean fever (FMF) is a severe systemic inflammatory condition and also represents the archetype of innate immunity deregulation. Therefore, the aim of this study is to investigate the risk for cancer development in FMF. Methods: The risk ratio (RR) for malignancies was separately compared between FMF patients and fibromyalgia subjects, Still's disease patients and Behçet's disease patients. Clinical variables associated with cancer development in FMF patients were searched through binary logistic regression. Results: 580 FMF patients and 102 fibromyalgia subjects, 1012 Behçet's disease patients and 497 Still's disease patients were enrolled. The RR for the occurrence of malignant neoplasms was 0.26 (95% Confidence Interval [CI.] 0.10-0.73, p=0.006) in patients with FMF compared to fibromyalgia subjects; the RR for the occurrence of malignant cancer was 0.51 (95% CI. 0.23-1.16, p=0.10) in FMF compared to Still's disease and 0.60 (95% CI. 0.29-1.28, p=0.18) in FMF compared to Behçet's disease. At logistic regression, the risk of occurrence of malignant neoplasms in FMF patients was associated with the age at disease onset (β1 = 0.039, 95% CI. 0.001-0.071, p=0.02), the age at the diagnosis (β1 = 0.048, 95% CI. 0.039-0.085, p=0.006), the age at the enrolment (β1 = 0.05, 95% CI. 0.007-0.068, p=0.01), the number of attacks per year (β1 = 0.011, 95% CI. 0.001- 0.019, p=0.008), the use of biotechnological agents (β1 = 1.77, 95% CI. 0.43-3.19, p=0.009), the use of anti-IL-1 agents (β1 = 2.089, 95% CI. 0.7-3.5, p=0.002). Conclusions: The risk for cancer is reduced in Caucasic FMF patients; however, when malignant neoplasms occur, this is more frequent in FMF cases suffering from a severe disease phenotype and presenting a colchicine-resistant disease

Reducing the environmental impact of surgery on a global scale: systematic review and co-prioritization with healthcare workers in 132 countries

Abstract Background Healthcare cannot achieve net-zero carbon without addressing operating theatres. The aim of this study was to prioritize feasible interventions to reduce the environmental impact of operating theatres. Methods This study adopted a four-phase Delphi consensus co-prioritization methodology. In phase 1, a systematic review of published interventions and global consultation of perioperative healthcare professionals were used to longlist interventions. In phase 2, iterative thematic analysis consolidated comparable interventions into a shortlist. In phase 3, the shortlist was co-prioritized based on patient and clinician views on acceptability, feasibility, and safety. In phase 4, ranked lists of interventions were presented by their relevance to high-income countries and low–middle-income countries. Results In phase 1, 43 interventions were identified, which had low uptake in practice according to 3042 professionals globally. In phase 2, a shortlist of 15 intervention domains was generated. In phase 3, interventions were deemed acceptable for more than 90 per cent of patients except for reducing general anaesthesia (84 per cent) and re-sterilization of ‘single-use’ consumables (86 per cent). In phase 4, the top three shortlisted interventions for high-income countries were: introducing recycling; reducing use of anaesthetic gases; and appropriate clinical waste processing. In phase 4, the top three shortlisted interventions for low–middle-income countries were: introducing reusable surgical devices; reducing use of consumables; and reducing the use of general anaesthesia. Conclusion This is a step toward environmentally sustainable operating environments with actionable interventions applicable to both high– and low–middle–income countries

Deep Learning Based Point Cloud Processing Techniques

In this study, deep learning techniques and algorithms used in point cloud processing have been analysed. Methods, technical properties and algorithms developed for 3D Object Classification and Segmentation, 3D object detection and tracking and 3D scene flow of point cloud data have been also analysed. 3D point cloud sensing techniques have been grouped as Multi-view, Volumetric approach and raw point cloud processing and mathematical models of them have been analysed. In 3D Object Classification and Segmentation, algorithms are given by analysing it in different categories as Convolutional Neural Network (CNN) based, Graph based, Hierarchical Data Structure-Based Methods and Others. 3D object detection and tracking, Segmentation-based, Frustum-based, Discretization-based analysed as point based and other methods. In each section, deep learning algorithms are compared with respect to applicability to real-time processing, amount of points, and relevance to large-scale or small-scale areas. In the last section, comparisons of point cloud processing methods are made and their advantages and disadvantages are given in the form of a table

Eğitim Müfettiş Yardımcılarının Örgütsel Adalet Algılarının Mesleki Tükenmişlik Düzeylerine Etkisi

Bu araştırmanın amacı, eğitim müfettiş yardımcılarının örgütsel adalet algılarının, mesleki tükenmişlik düzeylerini yordama gücünü belirlemektir. Araştırmada ilişkisel tarama modelli kullanılmıştır. Araştırmanın evreni Türkiye genelindeki tüm eğitim müfettiş yardımcılarından oluşmaktadır (N=346). Evrenin geneli üzerinde çalışılarak, örneklem alma yoluna gidilmemiştir. Maslach ve Jackson (1981) tarafından geliştirilen, Ergin (1992) tarafından Türkçeye uyarlanan Maslach Tükenmişlik Ölçeği ile Niehoff ve Moorman (1993) tarafından geliştirilen Yıldırım (2002) tarafından Türkçe’ye uyarlanan Örgütsel Adalet Ölçeği, veri toplama aracı olarak kullanılmıştır. Verilerin analizinde çoklu doğrusal regresyon analizi yöntemi kullanılmıştır. Araştırmada dağıtımsal, işlemsel ve etkileşimsel adalet değişkenleri ile duygusal tükenme ve duyarsızlaşma değişkenleri arasında anlamlı bir ilişki olduğu saptanmıştır. Bu nedenle eğitim müfettişleri başkanları, uygulamalarında örgütsel adalete daha çok dikkat etmelidirler

Comfort and quality of life in patients with breast cancer undergoing radiation therapy

WOS: 000378978900003PubMed ID: 27569071Purpose: Radiation therapy is generally applied after surgery for the treatment of breast cancer, which is among the most frequently observed types of cancer in females. Radiation therapy may have some negative effects on the quality of life due to various side effects such as changes in the skin, mucositis and fatigue. Our study was planned as a descriptive study, in order to examine the relationship between comfort and quality of life in breast cancer patients undergoing radiation therapy. Methods: This study involved 61 patients with breast cancer undergoing radiation therapy. Data were collected using "Patient Information Form", "Radiation Therapy Comfort Questionnaire" and "EORTC QLQ-BR23". The scales were applied twice, before the start and at the end of treatment. Data were evaluated via Wilcoxon test and Spearman correlation analyses. Results: No statistically significant difference was determined between comfort and quality of life average score before and after radiotherapy (p>0.05). A positive relationship was determined between the pain and symptom quality of life (p<0.05). Although a positive relationship was determined between comfort score and the functional and general quality of life areas, a negative relationship was detected with the symptom quality of life (p<0.01). Conclusion: Radiation therapy applied to breast cancer patients did not affect comfort and quality of life, On the contrary, the quality of life of patients increased along with their comfort levels and that comfort levels decreased as the experienced symptoms increased