Search results for " pediatria"

Development and Implementation of the AIDA International Registry for Patients With VEXAS Syndrome

2022

ObjectiveThe aim of this paper is to present the AutoInflammatory Disease Alliance (AIDA) international Registry dedicated to Vacuoles, E1 enzyme, X-linked, Autoinflammatory, Somatic (VEXAS) syndrome, describing its design, construction, and modalities of dissemination.MethodsThis Registry is a clinical, physician-driven, population- and electronic-based instrument designed for the retrospective and prospective collection of real-life data. Data gathering is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain real-world evidence for daily patients' management. The Registry may potentially communicate with other on-line tools dedicated to VEXAS syndrome, thu…

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

2022

ObjectiveThis 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).MethodsThis 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 an…

Development and implementation of the AIDA international registry for patients with Still's disease

2022

ObjectiveAim of this paper is to present the design, construction, and modalities of dissemination of the AutoInflammatory Disease Alliance (AIDA) International Registry for patients with systemic juvenile idiopathic arthritis (sJIA) and adult-onset Still's disease (AOSD), which are the pediatric and adult forms of the same autoinflammatory disorder.MethodsThis Registry is a clinical, physician-driven, population- and electronic-based instrument implemented for the retrospective and prospective collection of real-world data. The collection of data is based on the Research Electronic Data Capture (REDCap) tool and is intended to obtain evidence drawn from routine patients' management. The co…

Development and implementation of the AIDA international registry for patients with Schnitzler's syndrome.

2022

ObjectiveThe present paper describes the design, development, and implementation of the AutoInflammatory Disease Alliance (AIDA) International Registry specifically dedicated to patients with Schnitzler's syndrome.MethodsThis is a clinical physician-driven, population- and electronic-based registry implemented for the retrospective and prospective collection of real-life data from patients with Schnitzler's syndrome; the registry is based on the Research Electronic Data Capture (REDCap) tool, which is designed to collect standardized information for clinical research, and has been realized to change over time according to future scientific acquisitions and potentially communicate with other…

The AutoInflammatory Diseases Alliance Registry of monogenic autoinflammatory diseases

2022

ObjectiveThe present manuscript aims to describe an international, electronic-based, user-friendly and interoperable patient registry for monogenic autoinflammatory diseases (mAIDs), developed in the contest of the Autoinflammatory Diseases Alliance (AIDA) Network.MethodsThis is an electronic platform, based on the Research Electronic Data Capture (REDCap) tool, used for real-world data collection of demographics, clinical, laboratory, instrumental and socioeconomic data of mAIDs patients. The instrument has flexibility, may change over time based on new scientific acquisitions, and communicate potentially with other similar registries; security, data quality and data governance are corner …

Development and implementation of the AIDA International Registry for patients with Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Ad…

2022

ObjectiveAim of this paper is to illustrate the methodology, design, and development of the AutoInflammatory Disease Alliance (AIDA) International Registry dedicated to patients with the Periodic Fever, Aphthous stomatitis, Pharyngitis, and cervical Adenitis (PFAPA) syndrome.MethodsThis is a physician-driven, non-population- and electronic-based registry proposed to gather real-world demographics, clinical, laboratory, instrumental and socioeconomic data from PFAPA patients. Data recruitment is realized through the on-line Research Electronic Data Capture (REDCap) tool. This registry is thought to collect standardized information for clinical research leading to solid real-life evidence. Th…

Survey of neonatal respiratory support use in very preterm infants in Italy

2012

Background: Respiratory support in very preterm infants is often a life-saving procedure and several techniques are available. There is lack of data on the current use of these techniques. Methods and aim: We analyzed a cohort of infants <30 weeks gestation or < 1501 g birth weight, enrolled in the Italian Neonatal Network in 2009 and 2010 (n = 8297, mean gestation = 29.3 weeks, mean birth weight = 1089 g) to ascertain the use of several techniques. We also conducted a questionnaire survey of all neonatal units adhering to the Italian Neonatal Network, inquiring about preferred methods of respiratory support. Results: Conventional ventilation was used in 53% of these infants, high frequency…

PROGETTO DI SMART WORKING DURANTE LA PANDEMIA DI COVID-19: SMART CO-WORKING PER LA RETE ASSISTENZIALE FRA PEDIATRI DI LIBERA SCELTA E UN CENTRO DI RI…

2021

Obiettivi La pandemia di COVID-19 ha modificato le strategie assistenziali in modo radicale. Le necessità di distanziamento sociale hanno condizionato l’accesso alle cure ospedaliere, con il rischio che i pazienti cronici, più vulnerabili, venissero gestiti con inadeguata interazione con le famiglie e i pediatri di famiglia (PdF), con gravi ritardi diagnostici e terapeutici. Metodi Un questionario con 10 domande sulla gestione dei pazienti con ipotiroidismo congenito (IC) è stato inviato ai PdF della regione Sicilia (Palermo, Agrigento, Trapani, Enna, Caltanissetta, Siracusa). Risultati Hanno risposto 55 PdF che seguono da 2 a 3 pazienti con IC, con prevalenza più elevata in aree ad alta en…

SCUOLE DI SPECIALIZZAZIONE IN PEDIATRIA: SURVEY SULLA FORMAZIONE IN PNEUMOLOGIA PEDIATRICA

2016

Lifecycle of Polycystic Ovary Syndrome (PCOS): From In Utero to Menopause

2013

Context: Polycystic ovary syndrome (PCOS) is diagnosed during the reproductive years when women present with 2 of 3 of the following criteria: 1) irregular menstrual cycles or anovulation, 2) hyperandrogenism, and 3) PCO morphology. However, there is evidence that PCOS can be identified from early infancy to puberty based on predisposing environmental influences. There is also increasing information about the PCOS phenotype after menopause. The goal of this review is to summarize current knowledge about the appearance of PCOS at different life stages and the influence of reproductive maturation and senescence on the PCOS phenotype. Evidence: PubMed, the bibliography from the Evidence-Based …