Search results for "REGISTRY"
showing 10 items of 273 documents
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…
Funnel plots and choropleth maps in cancer risk communication: a Delphi study.
2019
In the last decades, the issues related to health risk communication to stakeholders and citizens involving health care practitioners and local political authorities have been increasingly debated. The study evaluated an alternative strategy to communicate cancer risk to local communities, involving an expert panel of public health operators in comparing two different graphic tools, Funnel Plot and Choropleth map.A Delphi method process was implemented to achieve a unified consensus on an expert panel of public health operators with regard to weaknesses and strengths of the Funnel Plot and the Choropleth map as tools for cancer risk communication to local communities and other stakeholders.…
Musculoskeletal manifestations in children with Behçet's syndrome: data from the AIDA Network Behçet's Syndrome Registry
2023
AbstractThis study aims to describe musculoskeletal manifestations (MSM) in children with Behçet’s syndrome (BS), their association with other disease manifestations, response to therapy, and long-term prognosis. Data were retrieved from the AIDA Network Behçet’s Syndrome Registry. Out of a total of 141 patients with juvenile BS, 37 had MSM at disease onset (26.2%). The median age at onset was 10.0 years (IQR 7.7). The median follow-up duration was 21.8 years (IQR 23.3). Recurrent oral (100%) and genital ulcers (67.6%) and pseudofolliculitis (56.8%) were the most common symptoms associated with MSM. At disease onset, 31 subjects had arthritis (83.8%), 33 arthralgia (89.2%), and 14 myalgia (…
Prevalence of Spinal Muscular Atrophy in the Era of Disease-Modifying Therapies: An Italian Nationwide Survey.
2022
ObjectiveSpinal muscular atrophy (SMA) is a neurodegenerative disorder caused by mutations in the SMN1 gene. The aim of this study was to assess the prevalence of SMA and treatment prescription in Italy.MethodsAn online survey was distributed to 36 centers identified by the Italian government as referral centers for SMA. Data on the number of patients with SMA subdivided according to age, type,SMN2copy number, and treatment were collected.ResultsOne thousand two hundred fifty-five patients with SMA are currently followed in the Italian centers with an estimated prevalence of 2.12/100,000. Of the 1,255, 284 were type I, 470 type II, 467 type III, and 15 type IV with estimated prevalence of 0…
Sociodemographic Characteristics and Interests of FeverApp Users
2021
The FeverApp Registry is a model registry focusing on pediatric fever using a mobile app to collect data and present recommendations. The recorded interactions can clarify the relationship between user documentation and user information. This initial evaluation regarding features of participants and usage intensity of educational video, information library, and documentation of fever events covers the runtime of FeverApp for the first 14 months. Of the 1592 users, the educational opening video was viewed by 41.5%, the Info Library was viewed by 37.5%, and fever events were documented by 55.5%. In the current sample, the role of a mother (p <
Correcting for non-ignorable missingness in smoking trends
2015
Data missing not at random (MNAR) is a major challenge in survey sampling. We propose an approach based on registry data to deal with non-ignorable missingness in health examination surveys. The approach relies on follow-up data available from administrative registers several years after the survey. For illustration we use data on smoking prevalence in Finnish National FINRISK study conducted in 1972-1997. The data consist of measured survey information including missingness indicators, register-based background information and register-based time-to-disease survival data. The parameters of missingness mechanism are estimable with these data although the original survey data are MNAR. The u…
Coupled variable selection for regression modeling of complex treatment patterns in a clinical cancer registry.
2013
For determining a manageable set of covariates potentially influential with respect to a time-to-event endpoint, Cox proportional hazards models can be combined with variable selection techniques, such as stepwise forward selection or backward elimination based on p-values, or regularized regression techniques such as component-wise boosting. Cox regression models have also been adapted for dealing with more complex event patterns, for example, for competing risks settings with separate, cause-specific hazard models for each event type, or for determining the prognostic effect pattern of a variable over different landmark times, with one conditional survival model for each landmark. Motivat…
Estimating completeness in cancer registries--comparing capture-recapture methods in a simulation study.
2008
Completeness of registration is one of the quality indicators usually reported by cancer registries. This allows researchers to assess how useful and representative the data is. Several methods have been suggested to estimate completeness. In this paper a multi-state model for the process of cancer diagnosis and treatment is presented. In principle, every contact with a doctor during diagnosis, treatment, and aftercare can give rise to a cancer registry notification with a certain probability. Therefore the states included in the model are "incident tumour" and "death" but also contacts with doctors such as consultation of a general practitioner or specialised doctor, diagnostic procedures,…
A precise stroke classification for evaluation of ischemic stroke subtypes and their relation with diabetes: is TOAST the best?
2010
To The Editor: Regarding the study by Turin et al1 performed to estimate the secular time trends in incidence using a population-based stroke registry in Japan, we discuss some issues of potential interest. First, have the authors classified stroke subtypes according TOAST classification or Oxfordshire classification? No mention has been made in the text concerning the classification methodology of ischemic stroke. It is conceivable that applying the TOAST classification2 of ischemic stroke (a classification with clinical, pathophysiological, anatomic, and instrumental basis that is easily applicable and widely validated) could provide a more precise selection of patients with lacunar strok…
Cancer risk among residents of Rhineland-Palatinate winegrowing communities: a cancer-registry based ecological study
2008
Abstract Aim To investigate the cancer risk among residents of Rhineland-Palatinate winegrowing communities in an ecological study. Methods On the basis of the Rhineland-Palatinate cancer-registry, we calculated age-adjusted incidence rate ratios for communities with a medium area under wine cultivation (>5 to 20 percent) and a large area under wine cultivation (>20 percent) in comparison with communities with a small area under wine cultivation (>0 to 5 percent). In a side analysis, standardized cancer incidence ratios (SIR) were computed separately for winegrowing communities with small, medium and large area under wine cultivation using estimated German incidence rates as refere…