CONSENT FORM IRVAP EN

CONSENT FORM ACCORDING TO DATA PROTECTION FOR A SURVEY ON „COVID-19 IN PATIENTS WITH APLASTIC ANAEMIA AND/OR PNH“

By ticking the “yes” box under “CONSENT TO DATA STORAGE” in the survey form you agree to the storage of your data.

WHAT IS THE PURPOSE OF THE SURVEY?

In our open-ended and open survey we would like to ask you a few questions on “COVID-19 in patients with Aplastic Anaemia and/or PNH”. Our aim is to gain knowledge about the effects of both COVID-19 vaccination and COVID-19 disease in this group of patients in order that scientists can consider them for better care in the future. With your participation, you will help and perhaps benefit from the results yourself.

WHICH DATA ARE COLLECTED?

In addition to personal information such as gender, year of birth, country and zip/postal code, we ask for information about illnesses, symptoms, therapies, COVID-19, and your habits. We also require an identity code (ID) of your choice, which we use to link several data records from the same person. For the greatest possible data protection, we advise you to enter no personal information, e.g. first name, surname. Instead, we recommend using a combination of letters and digits and special characters. When saving, information on the date and time of sending is added.

In addition to the survey, you have the option of providing an email address afterwards if you would like to receive further information or results from us in connection with this survey. This email address will be stored separately from the survey data and cannot be subsequently linked to it. For the greatest possible data protection, we advise you to use an email address that does not contain any personal information such as first name, last name.

HOW DO WE USE YOUR DATA?

We process and evaluate the survey data independently and make the results available to the participants and the public. Upon written request, the data may be passed on to research institutions exclusively for scientific purposes and free of charge and these research institutions may publish the data for scientific purposes exclusively. The use of the data for commercial purposes is excluded, and the data you provide will not be sold.

WHAT IS THE LEGAL STATUS OF THE DATA?

We do not collect any personal or person-related data for the survey. All information is voluntary, only the identity code (ID) for linking several data records from the same person who entered data at different times, is a mandatory field. After submission, the data are stored in this anonymised form.

In analogy to the Corona warning app of the Robert Koch Institute in Germany, we ask you to donate your data.

WHERE ARE THE DATA STORED?

The data transmitted by you will be stored temporarily, i.e. until retrieval by us, on servers of our provider 1&1 IONOS SE and after retrieval exclusively locally in Germany at Aplastische Anämie & PNH e.V.

WHAT ARE YOUR RIGHTS?

Data protection information according to Art. 13 ff EU General Data Protection Regulation (GDPR): In accordance with data protection, you also have the right to information, correction and deletion of your personal data. In this survey, this concerns the email address. Please contact us by email at info(at)aa-pnh.org.

It is not possible to delete anonymous data.

WHO IS RESPONSIBLE FOR THIS SURVEY?

Ulrike Göbel
Aplastische Anämie & PNH e.V.
Postfach 52 03 25
12593 Berlin
Germany
Email: info(at)aa-pnh.org

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