{"id":3936,"date":"2026-02-25T08:25:38","date_gmt":"2026-02-25T07:25:38","guid":{"rendered":"https:\/\/iph-multisite.berta-bewegt.ch\/?page_id=3936"},"modified":"2026-02-25T08:25:38","modified_gmt":"2026-02-25T07:25:38","slug":"datentransparenz","status":"publish","type":"page","link":"https:\/\/www.interpharma.ch\/en\/themen\/fuhrend-in-forschung-entwicklung\/mit-hochwertigen-gesundheitsdaten-medizinischen-fortschritt-sichern\/datentransparenz\/","title":{"rendered":"Data transparency"},"content":{"rendered":"\n<p>The\ndata collected by pharmaceutical companies in the course of clinical trials and\nsent to the authorities for authorisation purposes are protected and covered by\nstrict data protection regulations. This is the only way to ensure that\npatients\u2019 privacy is adequately protected. The regulatory authorities use the\nsubmitted data to examine the benefit-risk profile of a new medicinal product\nand to grant authorisation if the result is positive.<\/p>\n\n\n\n<p>In\nrecent years, there has been growing discussion of the disclosure of clinical\ndata relevant for authorisation so that not only the regulatory authorities but\nalso other scientists can examine the benefit-risk profile of a medicine.\nHowever, this raises a number of problems. There is a danger that study\nparticipants could be re-identified, for example through social media. This would\nundermine the protection of individual privacy, leading to a reduction in\npeople\u2019s willingness to participate in clinical trials and a consequent\nnegative impact on the introduction of new, effective therapies. Secondly, the\nintegrity of the regulatory authorities would be undermined. These authorities\nassess the benefit-risk profile of new medicines. The consequences (for the\nauthorities and the companies concerned) would be correspondingly severe if an\nauthorisation decision had to be corrected subsequently. Thirdly, clinical data\nmay also contain confidential commercial data that require protection in order\nto protect companies against \u201cfree riders\u201d and ensure that they can continue to\ninvest in the development of new medicines and indications.<\/p>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-data-transparency-guidelines\"><strong>Data transparency\nguidelines<\/strong><strong><\/strong><\/h2>\n\n\n\n<p>Against\nthis background, the pharmaceutical industry supports efforts to achieve\ngreater transparency. For instance, the European pharmaceutical industry\nassociation EFPIA has agreed joint data transparency guidelines with the US\nassociation PhRMA that foresee the following measures:<\/p>\n\n\n\n<ul class=\"post wp-block-list\">\n<li>Access to clinical data and study protocols for drugs approved in the EU and the U.S. will be provided to scientists in compliance with data protection and for justified research projects. Requests for this information will be examined by a Scientific Review Board to which external experts also belong. The requests and the identity of the requester will be made public. The scientists must undertake not to pass on the data to third parties and to submit their studies for peer review (assessment by other scientists).\u00a0<\/li>\n\n\n\n<li>The summary of the clinical trial reports sent to the regulatory authorities will be published.<\/li>\n\n\n\n<li>The patients involved in the trial will be provided with a summary of the trial results.<\/li>\n\n\n\n<li>Organizations are adopting data sharing and collaborative strategies.<\/li>\n\n\n\n<li>Irrespective of the outcome, all industry-funded trials will be published in a suitable form.<\/li>\n<\/ul>\n\n\n\n<h2 class=\"wp-block-heading\" id=\"h-obligation-to-register\">Obligation to register<\/h2>\n\n\n\n<p>Years\nago, the research-based pharmaceutical companies all over the world undertook\nto register all their clinical trials in study registries. This voluntary\nobligation also applies in Europe. In Switzerland, there has additionally been\na legal obligation to register trials since the Human Research Act came into\nforce in 2014. According to this obligation, all clinical trials performed in\nSwitzerland must be registered in a study register recognised by the World\nHealth Organization (WHO) or the official register in the USA,\nclinicaltrials.gov, before they begin. In addition, the trial must be\nregistered in the supplementary database operated by the Confederation.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The data collected by pharmaceutical companies in the course of clinical trials and sent to the authorities for authorisation purposes are protected and covered by strict data protection regulations. This is the only way to ensure that patients\u2019 privacy is adequately protected. The regulatory authorities use the submitted data to examine the benefit-risk profile of [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":14785,"parent":4160,"menu_order":2,"comment_status":"closed","ping_status":"closed","template":"page-templates\/unterthema.php","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-3936","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.2 (Yoast SEO v27.2) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Data transparency - Interpharma<\/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:\/\/www.interpharma.ch\/en\/themen\/fuhrend-in-forschung-entwicklung\/mit-hochwertigen-gesundheitsdaten-medizinischen-fortschritt-sichern\/datentransparenz\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Data transparency\" \/>\n<meta property=\"og:description\" content=\"The data collected by pharmaceutical companies in the course of clinical trials and sent to the authorities for authorisation purposes are protected and covered by strict data protection regulations. 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