This article has presented the key elements of the advocacy process and the steps to consider in developing an advocacy campaign. There are compelling reasons for engaging in advocacy, particularly as civil registration systems in many countries have progressed very little over the past 50 years. Lack of awareness of the benefits for individuals and governments has contributed to a vicious cycle of under development of civil registration and vital statistics systems. Advocates are needed across a range of sectors to persuade governments to make CRVS a priority and to work towards a greater political commitment and allocation of resources for establishing and improving systems. Advocating for better legal frameworks and policies that fully support a functioning and well-used CRVS system is needed. A selection of tools and resources has been included in this module to get you started in advocating for improvements in your CRVS system. Box 4 summarises some key considerations when developing your advocacy campaign.
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Higher hospital volume reduces early failure rates in single-stage revision TKR for infection: An analysis of the United Kingdom National Joint Registry and National Administrative Databases.
Knee Surg Sports Traumatol Arthrosc
January 2025
Royal Devon University Healthcare NHS Foundation Trust, Exeter, UK.
Purpose: Revision knee replacement (RevKR) for infection is rare but increasing. It is hypothesised that higher hospital volume reduces adverse outcomes. The aim was to estimate the association of surgical unit volume with outcomes following first, single-stage RevKR for infection.
View Article and Find Full Text PDFA phase II double-blind multicentre, placebo-controlled trial to assess the efficacy and safety of alpelisib (BYL719) in paediatric and adult patients with Megalencephaly-CApillary malformation Polymicrogyria syndrome (MCAP): the SESAM study protocol.
BMJ Open
December 2024
INSERM UMR1231 Génétique des Anomalies du Développement (GAD), Université de Bourgogne, Dijon, France.
Introduction: The megalencephaly capillary malformation polymicrogyria (MCAP syndrome) results from mosaic gain-of-function variants. The main clinical features are macrocephaly, somatic overgrowth, neurodevelopmental delay and brain anomalies. Alpelisib (Vijoice) is a recently FDA-approved PI3Kα-specific inhibitor for patients with PIK3CA-related overgrowth spectrum (PROS).
View Article and Find Full Text PDFDo Danish ICU Survivors Remain Employed After ICU Discharge? A Register-Based Longitudinal Cohort Study.
Crit Care Med
November 2024
Department of Public Health Epidemiology, National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark.
Objectives: Admission to ICU is associated with long-term consequences for the survivors. The study explores whether Danish ICU survivors remain employed after ICU discharge.
Design: A longitudinal register study of 16,284 Danish ICU survivors 25-67 years old 1:1 sex- and age-matched with general population references.
Long-term outcome of oesophageal atresia in adolescence (TransEAsome): a national French cohort study protocol.
BMJ Open
January 2025
Univ. Lille, Inserm, CHU Lille, U1286 - INFINITE - Institute for Translational Research in Inflammation, F-59000, Lille.
Introduction: The project, funded by the Agence Nationale de la Recherche, aims to evaluate the long-term outcomes of patients with oesophageal atresia (OA) between 13 and 14 years old and establish multiomics profiles using data from the world's biggest OA registry.
Methods And Analysis: is a national multicentre population-based cohort study recruiting participants from all qualified French centres for OA surgery at birth. The primary objective is to assess the prevalence of gastro-oesophageal reflux disease in adolescence among patients with OA, with several secondary objectives including the identification of risk factors and multiomic profiles from oesophageal biopsies and blood samples collected between 13 and 14 years old, compared with a control group.
Long-term epidemiological trends in (primary) pediatric central nervous system tumors: a 25-year cohort analysis in Western Mexico.
Childs Nerv Syst
January 2025
Ph.D. Human Genetics Program, Molecular Biology and Genomics Department, Human Genetics Institute "Dr. Enrique Corona-Rivera", University Center of Health Sciences, University of Guadalajara, Guadalajara, Mexico.
Background: Central nervous system tumors (CNSTs) represent a significant oncological challenge in pediatric populations, particularly in developing regions where access to diagnostic and therapeutic resources is limited.
Methods: This research investigates the epidemiology, histological classifications, and survival outcomes of CNST in a cohort of pediatric patients aged 0 to 19 years within a 25-year retrospective study at the Civil Hospital of Guadalajara, Mexico, from 1999 to 2024.
Results: Data was analyzed from 273 patients who met inclusion criteria, revealing a higher incidence in males (51.
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