Information on data protection for the initial questionnaire

Preliminary enquiry STXBP1 Engage

You are eligible for the interview. We now request an extended consent to collect further data about your child and you as the caregiver to prepare for the interview.

If you are still interested in the interview, you can now fill in the additional preliminary questions online and we will then contact you with further information.

Information from this initial questionnaire will only be used to contact you and for preparation of the interview.

What personal data is collected as part of the preliminary enquiries?

So-called personal data is collected to prepare for the interview and for admedicum to contact you. These data mainly include your and the child’s name, information on the illness and treatment, your email address. Apart from the survey platform Momentive (see below), only admedicum employees will see your personal data if this is useful and necessary for the fulfilment of their tasks.

Your data will not be used outside of the preliminary survey described above except for the purposes of contacting you and complying with legal requirements (see below).

Before the interview takes place, there will be a separate consent form detailing the use of all data collected here, during the interview and also any compensation payment. Our client, Encoded, will not see any data before you have signed such additional consent form.

Responsible for the collection of your data is:

admedicum GmbH & Co KG
Industriestrasse 171
50999 Cologne
Germany

For any questions, please contact us via e-mail: engageSTXBP1@admedicum.com

We conduct the survey via an online data collection platform. The name of this company is:

Momentive Europe UC
2 Shelbourne Buildings,
Second Floor,
Shelbourne Rd
Ballsbridge,
Dublin 4,
Ireland

Contact


Momentive Europe UC´s privacy policy can be viewed in detail here: https://www.surveymonkey.com/mp/legal/privacy/.  

Our client does not receive any personal data.

How do we store your data and for how long?

By storing it on a cloud service certified with the highest European industry standard ISO27018, admedicum ensures that your electronically stored data is safe from loss, destruction, manipulation, or access by unauthorized persons. Written notes and documents are also digitized and electronically secured. Paper originals are also kept in a safe place.

Your data will be stored at Momentive until the research is completed, but no longer than December 2023. After that, all your data on the Momentive platform will be deleted.

If you are selected for the interview, your data will be exported from the Momentive platform and stored on a separate server. Your data stored on that server will be deleted in accordance with the additional consent form to be signed by you before the interview.

You have the right to revoke the storage and use of your personal data at any time. Please read the next section for more information.

What rights do you have regarding your data?

You can revoke your consent to the use of the data you have provided at any time and without giving reasons. You then have the right to request the correction, blocking or deletion of all your information/data stored up to that point. We will comply with your request without delay and inform you of the measures taken.

In the event of a revocation, complaints or requests for information, but also simply in the event of questions regarding data protection, please contact our data protection officer:

Dr. Ruth Reimann

admedicum GmbH & Co KG
Industriestrasse 171
50999 Cologne
dataprotection@admedicum.com
Tel.: 02236-94733-60

In addition, according to Art. 77 GDPR, if you are a citizen of the European Union, you also have the right to complain to a supervisory authority.

If you live in the USA, you can file a complaint at the Office of Human Rights at https://ocrportal.hhs.gov/ocr/smartscreen/main.jsf

Back to the initial questionnaire and personal questions