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Mashup Score: 0Ethics and legal requirements for data linkage in 14 European countries for children with congenital anomalies - 9 month(s) ago
Introduction Linking healthcare data sets can create valuable resources for research, particularly when investigating rare exposures or outcomes. However, across Europe, the permissions processes required to access data can be complex. This paper documents the processes required by the EUROlinkCAT study investigators to research the health and survival of children with congenital anomalies in Europe. Methods Eighteen congenital anomaly registries in 14 countries provided information on all the permissions required to perform surveillance of congenital anomalies and to link their data on live births with available vital statistics and healthcare databases for research. Small number restrictions imposed by data providers were also documented. Results The permissions requirements varied substantially, with certain registries able to conduct congenital anomaly surveillance as part of national or regional healthcare provision, while others were required to obtain ethics approvals or informe
Source: bmjopen.bmj.comCategories: General Medicine Journals and Societies, Latest HeadlinesTweet
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Mashup Score: 0Join Us for Advocacy Day on the Hill - NFED - 12 month(s) ago
Join the NFED and their efforts to advocate for the Ensuring Lasting Smiles Act during their Advocacy Day on Capitol Hill.
Categories: Latest Headlines, Rare DiseaseTweet
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Mashup Score: 0The incidence of abdominal surgical site infections after abdominal birth defects surgery in infants: A systematic review with meta-analysis - 3 year(s) ago
: Surgical site infections (SSI) are a frequent and significant problem understudied in infants operated for abdominal birth defects. Different forms of SSIs exist, namely wound infection, wound dehiscence, anastomotic leakage, post-operative peritonitis and fistula development. These complications can extend hospital stay, surge medical costs and increase mortality. If the incidence was known,…
Source: Journal of Pediatric SurgeryCategories: Latest Headlines, PediatricsTweet
Read this new communication article on the processes required by the #EUROlinkCAT study investigators to research the health and survival of children with #congenitalanomalies in Europe. https://t.co/uqH9YoWEjR @EUROlinkCAT https://t.co/F1hWmwHwaD