{"id":5052,"date":"2022-07-06T14:50:47","date_gmt":"2022-07-06T12:50:47","guid":{"rendered":"https:\/\/www.alpha1-deutschland.org\/?p=5052"},"modified":"2022-07-06T14:52:52","modified_gmt":"2022-07-06T12:52:52","slug":"re-organisation-des-kinder-alpha-1-registers","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/re-organisation-des-kinder-alpha-1-registers","title":{"rendered":"Reorganization of the Child Alpha-1 Registry"},"content":{"rendered":"<div id=\"fws_6a8c9a8bbeeb6\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t<div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_border_width_5 vc_sep_pos_align_center vc_sep_color_grey wpb_content_element vc_separator-has-text\" ><span class=\"vc_sep_holder vc_sep_holder_l\"><span class=\"vc_sep_line\"><\/span><\/span><h4>Author<\/h4><span class=\"vc_sep_holder vc_sep_holder_r\"><span class=\"vc_sep_line\"><\/span><\/span>\n<\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p style=\"font-weight: 400;\"><strong>Prof. Dr. Rainer Ganschow<\/strong>, Director of the Clinic and Polyclinic for General Pediatrics Bonn<\/p>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"margin-top: 25px; height: 5px; margin-bottom: 25px;\" data-width=\"100%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"default\" class=\"divider-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>Since the registry was established, only 170 children from Germany have been recorded. Reports from the relevant pediatric hepatology centers have therefore been sporadic.<\/p>\n<p>Given that liver involvement in adult-onset AATD has rightly received much more attention, the pediatric Alpha-1 centers expressed a desire to restructure the registry to learn from the data both clinically and scientifically. The pediatric centers pledged close collaboration and welcomed the creation of a shared database to better advise patients and families in the future. It is quite possible that pediatric studies (similar to those in adults, such as siRNA studies) will be offered in the near future, and we in Germany should be optimally prepared for such studies. Our team in Bonn is already collaborating clinically and scientifically with Prof. Strnad&#039;s team in Aachen, and it would be desirable to extend this cooperation to other pediatric centers. In my view, the Aachen team is currently the world&#039;s leading authority on liver involvement in AATD, and we can certainly learn a great deal from internists for the care of our patients, and vice versa.<\/p>\n<p>For our 46 homozygous patients in Bonn, we have already established a very detailed database, which we intend to use as a model for the future direction of the registry. Following approval from our local ethics committee, we are permitted to transfer the data of the 170 patients currently entered into the registry to Bonn. There is a consensus among the pediatric centers that our team in Bonn will take the lead in maintaining the registry going forward, in close collaboration with the other centers. Reorganizing the pediatric registry will certainly require considerable effort. Data entry should be as simple and decentralized as possible, ideally with some data being entered by the parents themselves. We have already secured the services of a computer scientist who will develop the necessary technical infrastructure and create a corresponding website for us in the coming months.<\/p>\n<p>We hope to be able to report on initial successful steps soon.<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Author: Prof. Dr. Rainer Ganschow, Director of the Clinic and Polyclinic for General Pediatrics, Bonn. Since the registry was established, only 170 children from Germany have been recorded. The reports from...","protected":false},"author":1,"featured_media":5008,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,44],"tags":[],"class_list":["post-5052","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-kinder"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Re-Organisation des Kinder-Alpha-1-Registers - Ihr Online Portal f\u00fcr Mitglieder und Interessierte<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/alpha1-deutschland.org\/en\/re-organisation-des-kinder-alpha-1-registers\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Re-Organisation des Kinder-Alpha-1-Registers - 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