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Due to COVID-19 we are currently unable to guarantee our normal turnaround time for processing Data Access Requests.
We are working as fast as we can under the current conditions, but regret we cannot commit to any deadlines.
All relevant documents related to applying for data can be found at the bottom of this page.
One of the main goals of Hartwig Medical Foundation 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.
There are four data request scenarios (and thereby different routes that can be followed to obtain access to the data):
Please consult our Data Guide for details on the data available for research.
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 FAQs or send an email to info@hartwigmedicalfoundation.nl.
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. An extension can be requested by completing an online request form and can optionally include a one-time update of the licensed data. The request for extension will also be assessed in accordance with the Rules of Procedure and Guiding Principles for Data Access Requests.
The licensee will be informed whether their request for extension has been granted.
Note: the above procedure does not apply for DR-001 to DR-134. Instead you can download and complete the Data Access Request Renewal form and email it to info@hartwigmedicalfoundation.nl.
Approved Data Access Requests
If you wish to know which Data Access Requests have been submitted and approved, please refer to the list of approved Data Access Requests.
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 this standard form to get approval and submit the request. The approved request can be sent to ict@hartwigmedicalfoundation.nl, 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 Creating a Google Cloud Platform account).
To ensure the correct use of data provided by patients and institutions, the core values of Hartwig Medical Foundation have been translated into basic Guiding Principles in four different fields (social, ethical, legal and contractual). It goes without saying that Hartwig Medical Foundation applies a strict privacy policy to the use of personal data.
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).
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.
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.
Download the questionnaire for non-EEA parties
If your institution is a non-EEA party based in a jurisdiction without an adequacy decision, the questionnaire needs to be completed and the draft license agreement is to be agreed upon in advance, in order to be eligible for a data access.
Note: EEA-based parties are generally only subject to the Hartwig Medical Foundation’s ‘License Agreement for EEA countries’, also available for download below.
Researchers making use of data provided by Hartwig Medical Foundation will have to explicitly acknowledge this in every publication, by using at least the text below.
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.
For an exact description read our complete Publication Policy.