Development and Implementation of the AIDA International Registry for Patients With Still's Disease

Objective: Aim 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. Methods: This 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 collection of standardized data is thought to bring knowledge about real-life clinical research and potentially communicate with other existing and future Registries dedicated to Still's disease. Moreover, it has been conceived to be flexible enough to easily change according to future scientific acquisitions. Results: Starting from June 30th to February 7th, 2022, 110 Centers from 23 Countries in 4 continents have been involved. Fifty-four of these have already obtained the approval from their local Ethics Committees. Currently, the platform counts 290 users (111 Principal Investigators, 175 Site Investigators, 2 Lead Investigators, and 2 data managers). The Registry collects baseline and follow-up data using 4449 fields organized into 14 instruments, including patient's demographics, history, clinical manifestations and symptoms, trigger/risk factors, therapies and healthcare access. Conclusions: This international Registry for patients with Still's disease will allow a robust clinical research through collection of standardized data, international consultation, dissemination of knowledge, and implementation of observational studies based on wide cohorts of patients followed-up for very long periods. Solid evidence drawn from "real-life " data represents the ultimate goal of this Registry, which has been implemented to significantly improve the overall management of patients with Still's disease. NCT 05200715 available at

Recommendations for the rehabilitation of children with cerebral palsy

The SINPIA-SIMFER(Italian Society of Child and Adolescent Neuropsychiatry-Italian Society of Physical Medicine and Rehabilitation) Intersociety Commission was set up in December 2000 and is composed of members from both scientific societies, who are experts in the field of rehabilitation of patients with cerebral palsy (CP). In accordance with the indications of the Italian Health Ministry's Planning Department, in 1999 this Commission was entrusted with the task of drawing up "Guidelines for the Rehabilitation of Children Affected by Cerebral Palsy", and to successively revise and update it every five years. The present document is a summary of the latest update, drawn up through meetings of the Intersociety Commission, held in 2012 and 2013, and discussed and approved at the annual SINPIA-SIMFERmeeting held in Brindisi in October 2013. The current version of the Recommendations extends and updates the previous one, also addressing new areas of intervention and adding some in-depth analysis. The document as a whole is not so much a proposal for treatment updated on the basis of advancing knowledge in the field of rehabilitation of CP, as a presentation of the method that should be applied by professionals seeking to define the most appropriate intervention and treatment strategies. The text is the offspring of a process of careful exchanges, which have been conducted in a collegial and collaborative fashion among professionals working in different fields (rehabilitation medicine and child neuropsychiatry) and in healthcare settings at different levels (ranging from first-level local settings to third-level national ones) and of different types (affiliated outpatient clinics and centers, local health authorities, hospitals, "IRCCS" research hospitals, universities)