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APPLYING FOR DATA | DATA ACCESS REQUEST

Data usage for scientific research

For researchers who apply for data for scientific research which will contribute to the amelioration off treatments for cancer patients, the data will be made available, if the applications meets certain criteria. The scientific research has to serve the public interest and the requested data has to be necessary for the underlying research project.

An example of the data which you would like to request can be downloaded in the Data-Access-Requests folder at our resource page.

Data Access Request procedure

  1. send an email to info@hartwigmedicalfoundation.nl including the name, surname and email address of the main applicant. We will contact you within a week with information how to start the Data Access Request procedure in our digital request environment;
  2. within six weeks after submitting the complete signed digital data request form, the Scientific Board and an independent Data Access Board will assess the Data Access Request;
  3. if the Data Access Request is approved, the researcher, the Licensee and a representative of Hartwig Medical Foundation will sign a License Agreement EEA countries or license agreement non-EEA countries, about the rights and obligations regarding the data usage.

If you wish to know more about the request for data (see also the Guiding Principles and Rules of Procedure).

Handling data with care

Hartwig Medical Foundation applies core values on which its choices are based. For the usage of data provided by patients and institutions, these core values have been translated into basic principles and guidelines in four different fields (social, ethical, legal and contractual). Needless to say, Hartwig Medical Foundation applies a strict Privacy Policy for the usage of personal data.

European privacy legislation

In view of the European privacy legislation (i.e. the General Data Protection Regulation; “GDPR”), specific arrangements are made when the data are provided to a researcher in a country outside the European Economic Area, such as the standard contractual clauses for international transfers of personal data, as approved by the European Commission (the “EU Model Clauses”).

This means that:

Request for extension

A Licensee may also request for an extension of the term for the duration of which the Licencee may use the Licensed Data. When the term almost ends, our digital request environment will send a reminder to the Licensee. Through a new digital form in the digital request environment an extension can be requested. On request this may be inclusive of a one-time update of the Licensed Data. This request will again be assessed in accordance with the Rules of Procedure and the Guiding Principles.

If the extension is granted the Licensee will receive a notification from our digital request environment.

Note: for DR-001 until DR-134 we do not use above procedure, you can download the Data Request Renewal form

Rules for publication

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.

Data from patient report

Centers (hospitals) who would like to apply for data concerning their own patient reports, can download the data through the Hartwig-portal. You can enter the portal by filling in your user name and password. Here you will find automatically all raw data from your center. The data can be downloaded.

More information on the contents of patient reports, you will find at our website under Patient report – Contents of the report.

If you wish to know which applications for data have been submitted and approved please refer to our list of approved Data Access Requests.