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Landscape survey of OMICS data sources and their usability for research and patient care in Germany.

 

GHGA is a consortium funded via the German program for research data infrastructures - NFDI e.V.. GHGA is currently building a federated national infrastructure for the storage and sharing of human omics data. Providing a safe and secure home for data, GHGA enables data controllers to share data using FAIR principles, while complying with German and European data protection requirements. In doing so GHGA will facilitate data discovery and support the scientific community to maximise the value of omics data in genomic medicine and research. Find out more about GHGA at www.ghga.de.

 

Welcome to the survey:  „Omics data sources and their usability for research and patient care in Germany“.

Thank you for taking around 10 minutes to complete this survey. With this survey GHGA seeks to collect specific information related to the technical, legal and administrative aspects of the omics data your organisation is operating with.

This survey is being conducted by GHGA researchers at the German Cancer Research Center (DKFZ) in Germany (Heidelberg), the Technical University of Munich and Helmholtz Munich. It is designed to evaluate the needs of data producers with regards to data storage, data analysis and data sharing. Questions evaluate the current situation as well as future needs and wishes. The results will inform the services and functions GHGA will develop in a community driven way.

 

Responsible for this survey: The GHGA Team

For further question and comments please contact: ghga-office@dkfz-heidelberg.de

 

We thank you for your interest and help.

 

This survey is anonymous.

The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it.

If you used an identifying token to access this survey, please rest assured that this token will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification tokens with survey responses.

What happens to your data and how is it protected?

Your data will be used exclusively for the purpose described above. The answers are evaluated and stored at the German Cancer Research Center (DKFZ) in Germany (Heidelberg), the Technical University Munich and Helmholtz Munich. Optionally, we ask you to provide us with your name and email address so we can contact you with further questions in regards to improving GHGA services and products. No other questions will ask you to provide personal information or any data that could be used to identify you. If you choose not to enter contact information, the survey will be completely anonymousanonymised.  

The individual results of this survey will not be published and only used for internal purposes to optimise GHGA products and services. In addition we might publish results of the services in an aggregated form, which contain no personal  information linked to the individuals who have completed the survey.

What data protection rights do you have? 

The legal basis for data processing is your consent under Articles 6 (1) (a) of the General Data Protection Regulation (GDPR). The data controller within the meaning of Article 4 GDPR is the DKFZ. 

You have the right to withdraw your consent at any time without giving reasons by clicking on "Leave survey and delete answers" (top right in the header on each page of the questionnaire). In this case, all information you have provided up to that point will be deleted. 

In case you decide to not share your optional personal information with the survey, after the questionnaire has been submitted in full, it is no longer possible to withdraw your consent, as the individual questionnaires and data cannot be assigned personally. For this reason, you will no longer be able to obtain information about the data stored by the DKFZ after this point and you will not be able to request subsequent deletion, correction or restriction of their processing.

If you do share personal data with GHGA through this survey, you will have a number of rights under the GDPR that you may be entitled to exercise:

  • Article 15 - You have the right to request information about the processing of your personal data. You may also request access to a copy of the data.

  • Article 16 - You can request that GHGA correct any inaccuracies in the personal data you have provided.

  • Article 17 - You have the right to request that GHGA erases your personal data.

  • Article 18 - You can request that GHGA only processes your data in a restricted manner.

  • Article 20 - If you ask GHGA to provide a copy of your data it must be shared in a commonly used format. You can also request that GHGA transfers your personal data to another data controller.

 If you have any concerns about data processing and data protection compliance, you can contact the Data Protection Officer of the German Cancer Research Center: 

Data Protection Officer 
German Cancer Research Center
Im Neuenheimer Feld 280
69120 Heidelberg
Phone: 06221 / 420    
E-mail: datenschutz@dkfz.de

You have a right of appeal to any data protection supervisory authority under Articles 14 and 77 of the GDPR. You may also seek judicial remedy against GHGA if your data protection rights are violated under Article 79 GDPR. A list of the supervisory authorities in Germany can be found at:

https://www.bfdi.bund.de/DE/Infothek/Anschriften_Links/anschriften_links-node.html

Participation 

Participation in this survey is voluntary. 

Once you have read and understood this information and the privacy policy, you confirm your agreement to participate by accepting our privacy policy by ticking the box. Only then can you begin to respond. Your consent is valid when you submit the form.