Information on data protection for the initial questionnaire

Preliminary enquiry STXBP1 Engage

An important matter: the protection of your data.

What standards do we observe?

At admedicum we take the confidentiality of all information entrusted to us by participants very seriously. The reliable and responsible handling of what you entrust to us is a non-negotiable basis for our work with you and our clients.

For your greatest possible data security, we therefore naturally ensure compliance with the strict protection standards of the General Data Protection Regulation (GDPR) and the Federal Data Protection Act. However, we also assure you that we will do everything possible within our control to ensure that, in the event of any ambiguities or doubts, you are consulted before any data is passed on or used in a way that is not clearly and unambiguously agreed with you.

With this in mind, we ask you to read the following declaration of consent carefully and sign it before answering the preliminary questions. The legal basis for the collection of data by the working group results from Art. 6.1 a) of the GDPR.

The European GDPR is very strict and goes beyond all your rights under national and regional laws in the UK, the US, Canada and Australia. If you live in the UK, United States, Canada or Australia you can claim all your rights under local laws, however we herewith agree to hold your data protection rights towards us also according to European GDPR.

Information on the preliminary enquiry

On behalf of Encoded Therapeutics Inc., a biotechnology company based in California, USA, who is collaborating with the STXBP1 Foundation, we would like to conduct interviews with parents or caregivers of a child living with STXBP1 to learn more about the patient and family journey with STXBP1-related disorders.

In this interview, we would like to learn from you about your child’s journey from early symptoms to diagnosis, daily life experiences and the impact STXPB1 has on the whole family. The learnings from the interviews will be used to increase our understanding about STXBP1-related disorders.

In order to participate in the interview, we need some information in advance. If you are interested in the interview, you can fill in the preliminary questions online. If you are not eligible for the interview (e.g., because your child is older than 8 years of age) all data you have filled in will remain fully anonymous and be deleted as soon as the research is complete. We will not contact you.

If you are eligible for the interview, we will ask for an extension of your data privacy consent before proceeding with the initial questionnaire.  

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

So-called personal data is collected for the preliminary inquiry and for admedicum to find out whether you are eligible for the interview. These mainly include the diagnosis, age, and country of residence of your child. Apart from the survey platform Momentive (see below), only admedicum employees will see your personal data if this is useful and necessary for the fulfillment of their tasks.

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

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 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 until the research is completed, but no longer than December 2023. After that, all your data will be deleted.

You also 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.: +44 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

https://ocrportal.hhs.gov/ocr/smartscreen/main.jsf

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