Search results for "registry"

The role of registries in rare genetic lipid disorders: Review and introduction of the first global registry in lipoprotein lipase deficiency

2017

International audience; A good understanding of the natural history of rare genetic lipid disorders is a pre-requisite for successful patient management. Disease registries have been helpful in this regard. Lipoprotein Lipase Deficiency (LPLD) is a rare, autosomal-recessive lipid disorder characterized by severe hypertriglyceridemia and a very high risk for recurrent acute pancreatitis, however, only limited data are available on its natural course. Alipogene tiparvovec (Glybera (R)) is the first gene therapy to receive Marketing Authorization in the European Union; GENIALL (GENetherapy In the MAnagement of Lipoprotein Lipase Deficiency), a 15-year registry focusing on LPLD was launched in …

P6234Lipid goals are poorly attained in majority of patients with familial hypercholesterolemia in Latvia at the time of inclusion in the national re…

2017

Changes in life expectancy for cancer patients over time since diagnosis

2019

Highlights • Research question: how cancer impacts on LE changes during patients’ entire life • LE increased in patients surviving the first years and decreasing thereafter. • Patients’ LE in the end approached but seldom reached the general population’s LE. • This method describes when cancer survivors’ excess risk of death became negligible. • Life expectancy indicator is easy to be understood and interpreted by patients.

Global surveillance of trends in cancer survival 2000-14 (concord-3): analysis of individual records for 37 513 025 patients diagnosed with one of 18…

2018

Eser, Sultan (Balikesir Author)

Gynecologic cancers in pregnancy: guidelines based on a third international consensus meeting

2019

We aimed to provide comprehensive protocols and promote effective management of pregnant women with gynecological cancers. New insights and more experience have been gained since the previous guidelines were published in 2014. Members of the International Network on Cancer, Infertility and Pregnancy (INCIP), in collaboration with other international experts, reviewed existing literature on their respective areas of expertise. Summaries were subsequently merged into a manuscript that served as a basis for discussion during the consensus meeting. Treatment of gynecological cancers during pregnancy is attainable if management is achieved by collaboration of a multidisciplinary team of health c…

2020

Abstract A burgeoning body of literature suggests that poor childhood health leads to adverse health outcomes, lower educational attainment and weaker labour market outcomes in adulthood. We focus on an important but under-researched topic, which is the role played by infection-related hospitalization (IRH) in childhood and its links to labour market outcomes later in life. The participants aged 24–30 years in 2001 N = 1706 were drawn from the Young Finns Study, which includes comprehensive registry data on IRHs in childhood at ages 0–18 years. These data are linked to longitudinal registry information on labour market outcomes (2001–2012) and parental background (1980). The estimations wer…

The Software Crisis of Synthetic Biology

2016

In fifteen years, Synthetic Biology (SB) has moved from proof-of-concept designs to several flagship achievements. Standardisation efforts are still under way, basic engineering concepts such as modularity and orthogonality are still controversial in biology, and making predictions from computer models is still unreliable. A deep characterization in the pattern of re-use of biological blocks in SB has not been attempted to date. We have compared the topological organisation of two different technological networks, one associated to a standard, large-scale software repository and the second provided by the Registry of Standard Biological Parts (RSBP). Our results strongly suggest that softwa…

Lamotrigine use in pregnancy and risk of orofacial cleft and other congenital anomalies

2016

Objective: To test previous signals of a risk of orofacial cleft (OC) and clubfoot with exposure to the antiepileptic lamotrigine, and to investigate risk of other congenital anomalies (CA).Methods: This was a population-based case–malformed control study based on 21 EUROCAT CA registries covering 10.1 million births (1995–2011), including births to 2005 in which the clubfoot signal was generated and a subsequent independent study population of 6.3 million births. A total of 226,806 babies with CA included livebirths, stillbirths, and terminations of pregnancy following prenatal diagnosis. First-trimester lamotrigine monotherapy exposure in OC cases and clubfoot cases was compared to other …

“El Registro Civil y el contenido de su publicidad: experiencias españolas para el contexto cubano”

2021

La función de publicidad que caracteriza al Registro Civil lo convierte en una institución fundamental dentro del sistema de seguridad jurídica preventiva. De ahí que, sea importante estudiar si existe correspondencia entre el contenido de la publicidad del Registro y las situaciones jurídicas y sociales en que usualmente se desenvuelven las personas, como un medio para garantizar, desde esta perspectiva, su cuidado y desarrollo. En este sentido, se valora el contenido de la publicidad del Registro del Estado Civil cubano (Ley No.51/1985, de 15 de julio del Registro del Estado Civil), a partir de las experiencias españolas en la materia, siguiendo, en general, los avances de este último sis…

The economic impact of rectal cancer: A population-based study in Italy list of authors

2021

Costs of cancer care are increasing worldwide, and sustainability of cancer burden is critical. In this study, the economic impact of rectal cancer on the Italian healthcare system, measured as public healthcare expenditure related to investigation and treatment of rectal cancer patients is estimated. A cross-sectional cohort of 9358 rectal cancer patients is linked, on an individual basis, to claims associated to rectal cancer diagnosis and treatments. Costs refer mainly to years 2010&ndash