{"id":2297,"date":"2022-02-21T11:52:44","date_gmt":"2022-02-21T10:52:44","guid":{"rendered":"https:\/\/www.hartwigmedicalfoundation.nl\/?page_id=2297"},"modified":"2026-05-07T10:30:08","modified_gmt":"2026-05-07T08:30:08","slug":"data-access-request","status":"publish","type":"page","link":"https:\/\/www.hartwigmedicalfoundation.nl\/en\/data\/data-access-request\/","title":{"rendered":"Data Access Request\u00a0"},"content":{"rendered":"\n<style> \n#justify {\ntext-align: justify;\n}\n<\/style>\n\n<div id=\"justify\">\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<p class=\"wp-block-paragraph\">One of our main goals is to make our data available for scientific research. This scientific research must contribute to the improvement of treatment of cancer and must serve the public interest within the boundaries of privacy legislation. Only data that is required for the underlying research project may be requested.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><br>All relevant documents related to applying for data can be found at the bottom of this page. <\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h2 class=\"wp-block-heading has-text-align-left\" id=\"data-request-scenarios\">Types of data requests<\/h2>\n\n\n\n<p class=\"has-text-align-left wp-block-paragraph\">The Data Access Request procedure is specifically designed to assess whether the applicable research complies with the ethical and legal constraints in relevant legislation and the terms of the informed consent that was signed by the patient.<\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>The researcher wants to request access to data from one or more hospitals. In this scenario the researcher can, but does not need to, be affiliated with a hospital that has contributed samples to the Hartwig Medical Database. The <strong>Data Access Request<\/strong> procedure applies.<\/li>\n\n\n\n<li>The researcher wants to request access to a specific data set (EUCANcan MOSAIC, new sequencing technologies (Roche, Ultima)), with the specific and limited goal to benchmark technologies and data analysis tools. These follow the <strong>Data Access Request<\/strong> procedure but use partially pre-filled sections for specified uses (tool development and optimisation) to streamline the process. Only very limited clinical data (tumor type, sex, tumortype) will be made available through this mechanism, if more is required please follow the normal <strong>DAR<\/strong> route.  Please indicate the specific dataset when reaching out to the data-access team so they can pre fill those sections for you.<\/li>\n\n\n\n<li>The researcher wants to request access to data only from the hospital they are affiliated with. The <strong>Hospital Request<\/strong> procedure applies.<\/li>\n\n\n\n<li>The treating physician (or a researcher on their behalf) wants to request data of patient(s) from the hospital he\/she is affiliated with for reasons directly related to treatment of the patient. The <strong>Clinical Request<\/strong> procedure applies.<\/li>\n<\/ul>\n\n\n\n<p class=\"has-text-align-left wp-block-paragraph\">Please consult our <a href=\"https:\/\/hartwigmedical.github.io\/documentation\/data-access-request-guide.html\" target=\"_blank\" rel=\"noreferrer noopener\">Data Guide<\/a> for details on the data available for research.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h2 class=\"wp-block-heading\" id=\"data-access-request-procedure\">Data Access Request procedure<\/h2>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"257\" src=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2025\/03\/DataAccessRequest_Flow-1-1024x257.png\" alt=\"\" class=\"wp-image-8748\" srcset=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2025\/03\/DataAccessRequest_Flow-1-1024x257.png 1024w, https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2025\/03\/DataAccessRequest_Flow-1-300x75.png 300w, https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2025\/03\/DataAccessRequest_Flow-1-768x192.png 768w, https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2025\/03\/DataAccessRequest_Flow-1-1536x385.png 1536w, https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2025\/03\/DataAccessRequest_Flow-1-2048x513.png 2048w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>General procedure<\/strong><\/p>\n\n\n\n<ol class=\"wp-block-list\">\n<li>To request data access following the Data Access Request procedure, please send an email to&nbsp;<a href=\"mailto:dataaccess@hartwigmedicalfoundation.nl\" target=\"_blank\" rel=\"noreferrer noopener\">dataaccess@hartwigmedicalfoundation.nl<\/a>&nbsp;including the full name and the institutional email address of the main applicant. We will contact you within a week and provide information on how to submit an online Data Access Request.<\/li>\n\n\n\n<li>To access the data, you will need to create a Google Cloud Platform account (using the institutional email address of the download contact indicated in the Data Access Request form) and enable multi-factor authentication. For instructions, please see&nbsp;<a href=\"https:\/\/hartwigmedical.github.io\/documentation\/getting-a-Google-account.html\" target=\"_blank\" rel=\"noreferrer noopener\">Creating a Google Cloud Platform account<\/a>.<\/li>\n\n\n\n<li>Upon approval of the data access request, both parties will sign the license agreement. Please refer to the templates provided below for further details.<\/li>\n<\/ol>\n\n\n\n<p class=\"wp-block-paragraph\">If you wish to know more about the Data Access Request procedure, please read the Guiding Principles and the Rules of Procedure at the bottom of this page. If you have any other questions, please read the <a href=\"https:\/\/hartwigmedical.github.io\/documentation\/data-access-request-faq.html\">FAQs<\/a> or send an email to <a href=\"mailto:dataaccess@hartwigmedicalfoundation.nl\">dataaccess@hartwigmedicalfoundation.nl<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong><br><strong>Adding a researcher to an Approved Data Access Request<\/strong><\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>The main applicant is responsible for keeping the data access request up-to-date. As stipulated in article 4.5 of the License Agreement, the organization (the Licensee) must make a request to add (or delete) new users as users of the dataset to a Data Access Request. These users must be involved in the project and working in the organization with the approved Data Access Request. To update the request, please send an email to <a href=\"mailto:dataaccess@hartwigmedicalfoundation.nl\" target=\"_blank\" rel=\"noreferrer noopener\">dataaccess@hartwigmedicalfoundation.nl<\/a> confirming the addition or removal of researchers. Be sure to include their full name, function, institutional email address, and indicate if any of them should also be added as a download contact.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Request for extension of usage of the Data Access Request<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>A Licensee may request an extension of the term during which they may use the licensed data. The Licensee will receive a reminder to do so near the end of the term of the Data Access Request. The request for extension will also be assessed in accordance with the Rules of Procedure and Guiding Principles for Data Access Requests.<\/li>\n\n\n\n<li>To request a renewal of the data access request, please send an email to <a href=\"mailto:dataaccess@hartwigmedicalfoundation.nl\">dataaccess@hartwigmedicalfoundation.nl<\/a> including the name, surname and institutional email address of the main applicant of the Data Access Request Renewal. We will contact you within a week and provide information on how to submit an online Data Access Request Renewal.<\/li>\n\n\n\n<li>The licensee will be informed whether their request for extension has been granted.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>Approved Data Access Requests<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>If you wish to know which Data Access Requests have been submitted and approved, please refer to the list of <a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/en\/data\/research-and-science\/datarequests\/\">approved Data Access Requests<\/a>.<\/li>\n<\/ul>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h2 class=\"wp-block-heading\" id=\"clinical-request-procedure\">Clinical Request procedure<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Approval of the request (with description of the purpose, i.e. medical reason or original study purpose) should be collected from the Central study organization\/PI and the Local study PI of the hospital the applicant is affiliated with. Please use the Clinical Request Form to get approval and submit the request. The approved request can be sent to <a href=\"mailto:dataaccess@hartwigmedicalfoundation.nl\">dataaccess@hartwigmedicalfoundation.nl<\/a><em>,<\/em> after which the data will be prepared and made available through the Google Cloud Platform within one week. Note: making the data available requires a valid GCP account with multi-factor authentication enabled that has been created using the institutional email address of the person registered in the standard form. For instructions, please read <a href=\"https:\/\/hartwigmedical.github.io\/documentation\/getting-a-Google-account.html\">Creating a Google Cloud Platform account<\/a>.<\/p>\n<\/div>\n<\/div>\n\n\n\n<\/div>\n<div id=\"justify\">\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h2 class=\"wp-block-heading\" id=\"handling-data-with-due-care\">Handling data with due care<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">To ensure the correct use of data provided Hartwig Medical Foundation have been translated into basic Guiding Principles in four different fields (social, ethical, legal and contractual). It goes without saying that we apply a strict privacy policy to the use of personal data.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h2 class=\"wp-block-heading\" id=\"european-privacy-legislation\">European privacy legislation<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">In keeping with European privacy legislation (i.e. the General Data Protection Regulation, or GDPR), specific arrangements apply for providing data to parties residing in a country outside the European Economic Area (EEA).<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">On July 16th the EU Court of Justice (CoJ) passed judgment in the Schrems II case. In this judgment the EU-US Privacy Shield framework was declared invalid. This is part of the legal basis on which we transfer our data to US based parties, the other one being the EU Model Clauses. The judgment also raised the bar for data transfers to other non-EEA based parties, for whose jurisdiction the European Commission did not issue a so called adequacy decision.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>What does this mean?<\/strong><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">We can only transfer data to non-EEA parties if we can establish that the level of protection of data in such jurisdiction is adequate and the necessary contractual and technical measures are in place.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><strong>How do we establish this?<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li>Data requesters are required to provide Hartwig with a set of confirmations as regards data privacy protection in their jurisdiction. For that purpose we have adopted a list of confirmations , which is incorporated in the data request form.<\/li>\n\n\n\n<li>A license agreement specifically for non-EEA parties based in jurisdictions without an adequacy decision. The license agreement is available for <a href=\"\/en\/data\/data-acces-request\/#downloads\">download<\/a>.<\/li>\n\n\n\n<li>The technical measures in place to protect data from unwanted\/unauthorized access already met the required standards.<\/li>\n<\/ul>\n\n\n\n<p class=\"wp-block-paragraph\">Note: EEA-based parties are generally only subject to the Hartwig Medical Foundation\u2019s \u2018License Agreement for EEA countries\u2019, also available for <a href=\"#downloads\">download<\/a>.<\/p>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h2 class=\"wp-block-heading\" id=\"rules-for-publication\">Rules for publication<\/h2>\n\n\n\n<p class=\"wp-block-paragraph\">Researchers making use of data provided by us must acknowledge this in every publication, by using at least the text below.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">This publication and the underlying research are partly facilitated by Hartwig Medical Foundation and the Center for Personalized Cancer Treatment (CPCT) which have generated, analysed and made available data for this research.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">For an exact description read our complete Publication Policy.<\/p>\n\n\n\n<\/div>\n<\/div>\n<\/div>\n\n\n\n<div class=\"wp-block-columns is-layout-flex wp-container-core-columns-is-layout-8f761849 wp-block-columns-is-layout-flex\" id=\"downloads\">\n<div class=\"wp-block-column is-layout-flow wp-block-column-is-layout-flow\">\n<h2 class=\"wp-block-heading\" id=\"downloadsi\">Downloads<\/h2>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-96c1effa-3f36-4b84-8e23-d746fe8c65a4\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2023\/09\/License-Agreement-EEA-Countries-EN.pdf\">License Agreement EEA Countries (EN)<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2023\/09\/License-Agreement-EEA-Countries-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-96c1effa-3f36-4b84-8e23-d746fe8c65a4\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-c3ff4e1a-ef5a-4592-a867-03aa484b5a40\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2023\/09\/License-Agreement-Non-EEA-Countries-EN.pdf\">License Agreement Non EEA Countries (EN)<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2023\/09\/License-Agreement-Non-EEA-Countries-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-c3ff4e1a-ef5a-4592-a867-03aa484b5a40\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-7abce865-9f44-4de2-9f1e-23b4b9fc754d\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/09\/20220913-License-Agreement-NL-EN.pdf\">License Agreement NL<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/09\/20220913-License-Agreement-NL-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-7abce865-9f44-4de2-9f1e-23b4b9fc754d\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-7d50a1df-4a17-426d-a633-3d75e52e564e\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/01\/Clinical-Request-Form-EN.pdf\">Clinical Request Form<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/01\/Clinical-Request-Form-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-7d50a1df-4a17-426d-a633-3d75e52e564e\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-251c7a61-fca5-4b97-a539-a64398c288f1\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2023\/05\/Data-Request-Form-Additional-information-request-regarding-commercial-involvement.docx\">Data Request Form Additional information request regarding commercial involvement<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2023\/05\/Data-Request-Form-Additional-information-request-regarding-commercial-involvement.docx\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-251c7a61-fca5-4b97-a539-a64398c288f1\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-b218ddc8-386a-4407-af1d-574063940f22\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/12\/Rules-of-Procedure-Data-Access-Requests-Annex-II-License-Agreement-EN.pdf\">Rules of Procedure Data Access Requests (Annex II License Agreement)<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/12\/Rules-of-Procedure-Data-Access-Requests-Annex-II-License-Agreement-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-b218ddc8-386a-4407-af1d-574063940f22\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-0aa736e6-9ee4-4203-b039-07fd51d2ba27\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/01\/EU-Model-Clauses-Annex-III-License-Agreement-EN.pdf\">EU Model Clauses Annex III<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/01\/EU-Model-Clauses-Annex-III-License-Agreement-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-0aa736e6-9ee4-4203-b039-07fd51d2ba27\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-c4290dce-9e70-43bf-833a-21240609033d\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/12\/Publication-Policy-Annex-IV-License-Agreement-EN.pdf\">Publication Policy (Annex IV License Agreement)<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/12\/Publication-Policy-Annex-IV-License-Agreement-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-c4290dce-9e70-43bf-833a-21240609033d\">Download<\/a><\/div>\n\n\n\n<div class=\"wp-block-file\"><a id=\"wp-block-file--media-6201b636-884d-4743-9394-14a1133854ff\" href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/12\/Guiding-Principles-EN.pdf\">Guiding Principles (EN)<\/a><a href=\"https:\/\/www.hartwigmedicalfoundation.nl\/wp-content\/uploads\/2022\/12\/Guiding-Principles-EN.pdf\" class=\"wp-block-file__button wp-element-button\" download aria-describedby=\"wp-block-file--media-6201b636-884d-4743-9394-14a1133854ff\">Download<\/a><\/div>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"\/privacyEN\">Privacy Policy<\/a><\/p>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"<p>One of our main goals is to make our data available for scientific research. This scientific research must contribute to &hellip;<\/p>\n","protected":false},"author":3,"featured_media":11017,"parent":2273,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"footnotes":""},"class_list":["post-2297","page","type-page","status-publish","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Data Access Request\u00a0 - Hartwig Medical Foundation<\/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.hartwigmedicalfoundation.nl\/en\/data\/data-access-request\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Data Access Request\u00a0 - Hartwig Medical Foundation\" \/>\n<meta property=\"og:description\" content=\"One of our main goals is to make our data available for scientific research. 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