Data Access Request
This webpage is only available in English
One of our main goals is to make the data held on behalf of patients available for scientific research. By the patients consent this scientific research must contribute to the improvement of treatment of cancer and must serve the public interest within the boundaries of the relevant privacy legislations. Only the data that is required for the underlying research project can be shared.
All relevant documents related to applying for data can be found here, with detailed documents available at the bottom of this page.
Types of data requests
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.
- 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 Data Access Request procedure applies.
- The researcher wants to request access to data only from the hospital they are affiliated with. The Hospital Request procedure applies.
Any questions from the treating physician that wants to request data of patient(s) from the hospital they are affiliated with for reasons directly related to treatment of the patient, please contact diagnosticssupport@hartwigmedicalfoundation.nl.
Please consult our Data Guide for details on the data available for research.
Data Access Request procedure
General procedure
- To request data access following the Data Access Request procedure, please send an email to dataaccess@hartwigmedicalfoundation.nl including the full name and the institutional email address of the applicant. We will contact you within a week and provide information on how to submit an online Data Access Request.
- To access the data, you will need to create a Google Cloud Platform account (see Creating a Google Cloud Platform account).
- Upon approval of the Data Access Request by our Board, the Agreement between Hartwig and the Institution becomes effective under our General Terms & Conditions. The Agreement consists of the General Terms & Conditions, the signed Data Access Request Form, the Guiding Principles, the Rules of Procedure Data Access Requests, the Publication Policy and, where applicable, the EU Standard Contractual Clauses. Please refer to the documents provided below for further details.
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 dataaccess@hartwigmedicalfoundation.nl
Adding a researcher to an Approved Data Access Request
The applicant is responsible for keeping the Data Access Request up-to-date. As stipulated in our General Terms & Conditions, the Institution must ensure that any Researcher who replaces another, or any additional Researcher appointed to the Research Project, has the same level of experience, knowledge and expertise, and is bound by and complies with the Agreement. Institution shall inform Hartwig of any such replacement or addition. To update the request, please send an email to dataaccess@hartwigmedicalfoundation.nl 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.
Request for extension of usage of the Data Access Request
Institution may submit a Renewal Request to extend the term during which Applicant and Researcher(s) may use the Hartwig Data. In accordance with our General Terms & Conditions:
- the initial term of the Agreement is a maximum of 2 years;
- Institution may submit Renewal Requests, extending the total term of the Agreement to a maximum of 6 years.
The Renewal Request must be submitted at least 2 months before the expiry of the then-current term to ensure continued access to the Hartwig Data. Each Renewal Request is reviewed by the Data Access Board and decided upon by the Board.
To request a renewal, please send an email to dataaccess@hartwigmedicalfoundation.nl 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.
Institution will be informed in writing whether the Renewal Request has been approved by the Board.
European privacy legislation
In keeping with European privacy legislation (the GDPR), specific safeguards apply when Hartwig Data is made available to an Institution located outside the European Economic Area (EEA).
Our General Terms & Conditions distinguish between two situations:
- Institutions located in a country for which the European Commission has adopted an adequacy decision; and
- Institutions located in a country without such an adequacy decision. In this case, Institution provides additional warranties (e.g. regarding orders from public authorities) and the EU Standard Contractual Clauses (Module I: controller-to-controller) form an integral part of the Agreement.
These safeguards are set out in full in the General Terms & Conditions and the EU Standard Contractual Clauses, both available for download below.
Publication Policy
Researchers making use of data provided by us must acknowledge this and abide by our Publication Policy, which includes the relevant acknowledgment text.
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.
Downloads
Cancer is caused by DNA mutations. There are an increasing number of drugs available that act on specific errors in the DNA of an individual patient’s tumor. A drug that doesn’t fit, like a key in a lock, will not work, while the risk of side effects remains.