{"id":31,"date":"2014-03-11T17:28:14","date_gmt":"2014-03-11T17:28:14","guid":{"rendered":"http:\/\/nephceurope.net\/nc\/?page_id=31"},"modified":"2021-02-18T16:24:47","modified_gmt":"2021-02-18T16:24:47","slug":"onderzoek","status":"publish","type":"page","link":"https:\/\/nephceurope.eu\/nc\/onderzoek\/","title":{"rendered":"News"},"content":{"rendered":"<p><iframe loading=\"lazy\" src=\"https:\/\/www.youtube.com\/embed\/7AzxEr1A520?list=PLgNh-zdzGt5mQ3cVIdIszCQbWJJtURr6y\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<p><strong>News from the international community:<\/strong><\/p>\n<p><strong><span style=\"color: #3366ff;\">COVID 19 Vaccinations<\/span><\/strong><\/p>\n<p>Please find enclosed the official recommendations on Covid19 Vaccinations on behalf of the European Reference Networks for Rare Diseases.<\/p>\n<p><a href=\"http:\/\/nephceurope.eu\/nc\/wp-content\/uploads\/2021\/02\/20210205_summary_ERN_COVID-19_Vaccination_DEF.pdf\">20210205_summary_ERN_COVID-19_Vaccination_DEF<\/a><\/p>\n<p>&nbsp;<\/p>\n<p><strong><span style=\"color: #3366ff;\">TRIALS<\/span><\/strong><\/p>\n<ul>\n<li>Looking for <strong>Nephrotic Syndrome<\/strong> <strong>clinical trials world wide<\/strong>?<br \/>\nPlease have a look at <a href=\"https:\/\/clinicaltrials.gov\/\">this site<\/a><\/li>\n<li>In case you look for <strong>European Research and trials<\/strong> click <a href=\"https:\/\/www.clinicaltrialsregister.eu\/ctr-search\/search\">here<\/a><\/li>\n<li><strong>New Dutch treatment researchproject<br \/>\n<\/strong><a href=\"http:\/\/www.restern.nl\">RESTERN<\/a><\/li>\n<li><a href=\"http:\/\/www.learns.nl\/\">LEARNS<\/a> project The Netherlands and Belgium<\/li>\n<\/ul>\n<p>&nbsp;<\/p>\n<p><strong><span style=\"color: #3366ff;\">EU PROJECTS<br \/>\n<\/span><br \/>\n<\/strong><a href=\"http:\/\/nephceurope.eu\/nc\/wp-content\/uploads\/2016\/02\/EURenOmics_newsletter_0216_final.pdf\">EURenOmics_newsletter_0216_final<br \/>\n<\/a>RD- connect News:\u00a0 <a href=\"http:\/\/rd-connect.eu\/?wysija-page=1&amp;controller=email&amp;action=view&amp;email_id=44&amp;wysijap=subscriptions\" target=\"_blank\" rel=\"noopener\">Newsletter<\/a><\/p>\n<p>&nbsp;<\/p>\n<p><strong><span style=\"color: #3366ff;\">Recent new and important articles:<\/span><\/strong><\/p>\n<p><strong>Theme: treatments<br \/>\n<\/strong>News on\u00a0<a href=\"http:\/\/nephceurope.eu\/nc\/wp-content\/uploads\/2016\/03\/Rituximab-treatment.pdf\">Rituximab treatment<br \/>\n<\/a>News on\u00a0<a href=\"http:\/\/nephceurope.eu\/nc\/wp-content\/uploads\/2016\/03\/Rituximab-trial.pdf\">Rituximab trial<\/a><a href=\"http:\/\/nephceurope.eu\/nc\/wp-content\/uploads\/2016\/03\/Rituximab-trial.pdf\"><br \/>\n<\/a>News on\u00a0<a href=\"http:\/\/nephceurope.eu\/nc\/wp-content\/uploads\/2016\/03\/ABO-incompatible-kidney-transplantation.pdf\">ABO incompatible kidney transplantation<\/a><\/p>\n<p><strong>Theme: Facts and figures<\/strong><\/p>\n<p>&nbsp;<\/p>\n<p><strong>Theme: Patientinvolvement<\/strong><\/p>\n<p><strong>Recommendations for Successful Patient Involvement in Scientific Research<br \/>\n<\/strong>Introduction<\/p>\n<p>The Netherlands is one of the front runners in promoting patient participation in scientific research. This has resulted in several studies focusing on the facilitators, barriers and instruments for meaningful involvement of patients. Patient organisations, as well as researchers and health research funders expressed the need to translate this knowledge into recommendations for daily use. Therefore, PGOsupport, a Dutch networking organisation that facilitates patient support groups to share information and expertise, initiated a series of three meetings, a literature scan and an electronic survey. The objective of the meetings was to exchange knowledge and experience and to develop a list of practical recommendations based on available evidence and expert opinions. In total, 30 representatives from 24 renowned organisations participated in this process. Consensus was reached on a set of 9 recommendations, which are presented and explained in this article\u2026..<a href=\"http:\/\/nephceurope.eu\/nc\/wp-content\/uploads\/2016\/08\/Recommendations-participation-patients-in-research_def-Aug16.pdf\">Recommendations participation patients in research_def Aug16<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>News from the international community: COVID 19 Vaccinations Please find enclosed the official recommendations on Covid19 Vaccinations on behalf of the European Reference Networks for Rare Diseases. 20210205_summary_ERN_COVID-19_Vaccination_DEF &nbsp; TRIALS Looking for Nephrotic Syndrome clinical trials world wide? Please have a look at this site In case you look for European Research and trials click [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"open","ping_status":"closed","template":"","meta":{"footnotes":""},"class_list":["post-31","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/pages\/31"}],"collection":[{"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/comments?post=31"}],"version-history":[{"count":22,"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/pages\/31\/revisions"}],"predecessor-version":[{"id":676,"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/pages\/31\/revisions\/676"}],"wp:attachment":[{"href":"https:\/\/nephceurope.eu\/nc\/wp-json\/wp\/v2\/media?parent=31"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}