Search results for "REGISTRY"
showing 10 items of 273 documents
Supportive care services in hemato-oncology centers: a national survey
2016
Background: In the field of hemato-oncology, there is paucity of data assessing models of integration between hemato-oncology and other partner specialties. The aim of this national survey was to gather information about the status of the integration of this kind of activity in hemato-oncologic units existing in Italy. Methods: A national telephone survey was conducted to gather information about the status of the integration of hemato-oncologic and supportive care/anesthesiological services. From the national registry of hemato-oncology units, 149 centers were contacted by phone and a dedicated doctor was identified to gather information about the center through a telephone interview. Resu…
Population-based cancer registries in Spain and their role in cancer control
2010
Abstract Population-based cancer registries (PBCRs) are a key element for cancer control. They measure cancer incidence and trends, provide indicators for planning and evaluating cancer control activities, and undertake research. The first two PBCRs in Spain were established in Zaragoza in 1960 and Navarre in 1970, but it was from 1980 to 1995 when most of the existing registries went into operation. Today, 26.5% of the Spanish population is served by a cancer registry. All registries’ quality-control indicators meet the inclusion criteria for comparability and quality of data required by the International Agency for Research on Cancer, and indeed some fulfil most of the excellence criteria…
Clinical features, disease progression and use of healthcare resources in a large sample of 866 patients from 24 headache centers: A real-life perspe…
2021
Objective: To develop a dedicated Italian chronic migraine (CM) database (IRON project) to overcome disease misconceptions, improve clinical administration, reduce patients' burden, and rationalize economic resource allotment.Background: Proper CM management requires a comprehensive appraisal of its full clinical, social, and economic complexity.Methods: In this cross-sectional study, CM patients were screened in 24 certified headache centers with face-to-face interviews. Information on sociodemographic factors, medical history, characteristics of CM, and of prior episodic migraine (EM), and healthcare resource use was gathered using a semistructured web-based questionnaire.Results: A total…
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…
Impact of the COVID-19 pandemic on incidence, time of diagnosis and delivery of healthcare among paediatric oncology patients in Germany in 2020: Evi…
2021
ABSTRACT Background The indirect impact of the COVID-19 pandemic on cancer care and timely diagnosis is of increasing concern. We investigated the impact of the COVID-19 pandemic on incidence, time of diagnosis and delivery of healthcare among paediatric oncology patients in Germany in 2020. Methods We analysed incident paediatric cancer cases diagnosed in 0- to 17-year olds in Germany in 2020 using data of the German Childhood Cancer Registry. Absolute numbers and age-standardised incidence rates (ASR) in 2020 were compared to the previous five years (2015–2019). Moreover, we conducted a survey with open-ended questions, gathering perceptions of the diagnostic process and healthcare delive…
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…
Early deaths from childhood cancer in Germany 1980-2016
2020
Abstract Background Even though the survival of childhood cancer has improved over the last decades, there are still children dying shortly after diagnosis. The aim of the study is to add to understanding of the reasons for deaths shortly after date of diagnosis. Methods Using data of the population-based German Childhood Cancer Registry (cancer below 15 years of age diagnosed between 1980 and 2016), we compared characteristics of 671 children with cancer who died within 30 days of diagnosis to 53,649 patients with childhood cancer who survived longer. In addition to a descriptive analysis, we used logistic regression with multivariable fractional polynomials to describe the relationship be…
A Hospital-Based and a Population-Based Stroke Registry Yield Different Results: The Experience in Dijon, France
1996
The aim of this study was to demonstrate the different results obtained from a population-based and a hospital-based stroke study in the same city.Between January 1 and December 31, 1993, we collected information on all of the first strokes in the population of the city of Dijon, in conjunction with the Dijon Stroke Registry, collecting the first-ever strokes from patients living in Dijon as well as on all the first strokes in residents and nonresidents of Dijon who were treated at Dijon University Hospital. Demographic details, medical history, vascular risk factors, stroke subtype, as diagnosed by CT scan, and mortality rates were compared between the strokes observed in the population of…
Towards a validated definition of the clinical transition to secondary progressive multiple sclerosis: A study from the Italian MS Register.
2022
Background: Definitions for reliable identification of transition from relapsing-remitting multiple sclerosis (MS) to secondary progressive (SP)MS in clinical cohorts are not available. Objectives: To compare diagnostic performances of two different data-driven SPMS definitions. Methods: Data-driven SPMS definitions based on a version of Lorscheider’s algorithm (DDA) and on the EXPAND trial inclusion criteria were compared, using the neurologist’s definition (ND) as gold standard, in terms of sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), Akaike information criterion (AIC) and area under the curve (AUC). Results: A cohort of 10,240 MS patients wi…
Phenotype/Genotype Relationship in Left Ventricular Noncompaction: Ion Channel Gene Mutations Are Associated With Preserved Left Ventricular Systolic…
2021
International audience; Background: Few data exist concerning genotype-phenotype relationships in left ventricular noncompaction (LVNC).Methods and results: From a multicenter French Registry, we report the genetic and clinical spectrum of 95 patients with LVNC, and their genotype-phenotype relationship. Among the 95 LVNC, 45 had at least 1 mutation, including 14 cases of mutation in ion channel genes. In a complementary analysis including 16 additional patients with ion channel gene mutations, for a total of 30 patients with ion channel gene mutation, we found that those patients had higher median LV ejection fraction (60% vs 40%; P < .001) and more biventricular noncompaction (53.1% vs 18…