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Due to COVID-19 we currently cannot commit to our turnaround time of processing your Data Access Request.
We operate the best at our current possibilities, but cannot commit to any deadline.

APPLYING FOR DATA | DATA POLICY

All relevant documents related to applying for data can be found at the bottom of this page.

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Data usage for scientific research or reasons directly related to treatment of the patient

 

One of the main goals of the Hartwig Medical Foundation is to make our data available for scientific research. This scientific research needs to contribute to the amelioration of treatments for cancer patients, and has to serve public interest within the boundaries of privacy legislation. Data that is requested has to be necessary for the underlying research project. 

There are four types of data request scenarios (and thereby different routes to follow to get permission to access the data):

  1. The researcher wants to request access to data from several hospitals. In this scenario the researcher can, but does not need to be affiliated with one of the hospitals that contributed samples to the Hartwig database. For this scenario our Data Access Request procedure always needs to be followed.
  2. The researcher wants to request access to data from only the hospital he/she is affiliated with for research purposes different from what the study was originally designed for (re-use of the data).  Also for this scenario our Data Access Request procedure needs to be followed. Although this access request only covers data from the hospital where the researcher is affiliated with, it is re-use of the data and our Data Access Request Procedure is specifically designed to assess whether the research falls within the ethical and legal constraints of applicable laws and the informed consent that is signed by the patient. 
  3. The treating physician, or researcher on behalf of the treating physician, wants to request data from patient(s) of the hospital he/she is affiliated with for reasons directly related to treatment of the patient. The Clinical Request procedure can be followed.
  4. The researcher wants to request access to data from only the hospital he/she is affiliated with, for the research purpose for which the study was originally designed. The Clinical Request procedure can be followed.

 

For details about the available data for your research please consult our Data Guide.

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. For details of our Data Access Request procedure in our digital request environment please visit the general instructions on filling in the Data Access Request Form.
  2. During the Data Access Request procedure, you will need to create a Google Cloud Platform account with the institutional email address of the download contact indicated in the Data Access Request form and enable multi-factor authentication. Please find instructions in the setting-up a Google Cloud Platform account documentation
  3. Within six weeks after submitting the complete signed digital Data Access Request data request form, the Scientific Board and an independent Data Access Board will assess the Data Access Request.
  4. 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.
  5. After the License Agreement has been signed, Hartwig Medical Foundation will make the licensed data available through Google Cloud Platform.

If you wish to know more about the Data Access Request procedure, please see the Guiding Principles and Rules of Procedure at the bottom of this page. If you have any questions, please visit our FAQ or send an email to info@hartwigmedicalfoundation.nl.

 

Adding a download contact to an approved Data Access Request

  1. As also stipulated in article 4.5 of the License Agreement, the requesting institution (the Licensee) must make a request for adding new users as ‘download contact’ for your Data Access Request.These users must be persons working on the project within the institution whose Data Access Request has been approved.
  2. We would like to receive an email from the person who has signed the License Agreement on behalf of the institution (not the researcher) with a formal request including the number of the Data Access Request and the name, function and email address of the new user.
  3. You will receive a confirmation of receival.
  4. We can thereafter make the data available for the new ‘download contact’ through the Google Cloud Platform. Before we can do this, a valid GCP account, with multi-factor authentication enabled, needs to be  set-up with this email address (please find instructions in the setting-up a Google Cloud Platform account documentation).

Request for extension of usage of the data of the Data Access Request

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 of the Data Access Requests.

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 Access Request Renewal form, fill it in and send 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 our list of approved Data Access Requests.

Clinical Request procedure

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 requester is affiliated with. Please use this standardised form for your request. The approved request can be sent to ict@hartwigmedicalfoundation.nl and data will be prepared and made available through the Google CLoud Platform within 1 week.

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 Guiding Principles 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:

  • for Licencees from EEA countries the Hartwig Medical Foundation (generally) has the License Agreement EEA countries;
  • for Licencees from non-EEA countries the Hartwig Medical Foundation has a License Agreement Non-EEA countries, including Annex III (EU Model Clauses).

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.