Cologne, Germany, March 14, 2023
At admedicum, we take the protection and confidentiality of all information entrusted to us by all participants very seriously. The reliable and responsible handling of what you entrust us with is a non-negotiable basis for our work with you and our customers.
For your best possible data security and that of your child or the person in your care, we therefore guarantee compliance with the strict protection standards of the European Union’s (EU) General Data Protection Regulation (GDPR). We assure you, however, that we will do everything within our influence to ensure that, in the event of ambiguities or doubts, we will consult with you before personal data is used in any other way than what has been clearly and unambiguously agreed with you.
admedicum will not know the identity of the participants and will not track their IP addresses. We guarantee compliance with the protection standards of the EU GDPR, which are very strict and go beyond all your rights under national and regional laws in the UK, US, Canada, and Australia. If you reside in the UK, US, Canada, or Australia, you may claim all your rights under local laws; however, we herewith agree to hold your data protection rights towards us also according to EU GDPR.
Of course, your participation in this online survey is fully voluntary.
As such, we request that you read and agree to the following data protection policy before providing your personal data. The legal basis for the collection of personal data by admedicum results from Articles 6(1)(a) and 9(2)(a) of the GDPR (i.e., your consent).
Responsible data controller for the data collection
is our customer,
Encoded Therapeutics Inc.
341 Oyster Point Boulevard
United States of America
admedicum GmbH & Co KG
act on behalf of our customer as their data processor.
The survey is conducted via an online data collection platform. The name of this company and therefore the data sub-processor is:
Momentive Europe UC (trading as SurveyMonkey)
2 Shelbourne Buildings,
Data Protection Officer
of admedicum is:
Dr. Ruth Reimann
admedicum Business for Patients GmbH & Co KG
50999 Cologne, Germany
Purpose of the online survey
The online survey will be completed by parents and/or caregivers who have a loved one living with an STXBP1-related disorder so that we may learn more about the patient and family experience.
The goal of this survey is to gather information from parents and caregivers about what it truly means to care for someone living with STXBP1, and to capture the similarities and differences of STXBP1 from the patient/family perspective.
The online survey will include questions regarding life with STXBP1 such as the patient journey experienced from early symptoms to diagnosis, current care and the burden of the disease. Under no circumstances will products be described or recommended directly or indirectly in the survey.
The pseudonymyzed results will be used for scientific publication and discussion at medical conferences and events in order to improve the information and the care of people living with STXBP1.
What personal data will be collected through the online survey?
The survey will include questions regarding the gender, age, and health data regarding STXB1 of your (adult) child, information regarding the life of your child or the person in your care with the disease, the impact of the disease on your child and the family, and other related aspects. admedicum will not use your personal data or that of your child or the person in your care outside of the described project. You will not be asked for your name or other data that we or others may use to identify you. In addition, your IP address will not be tracked when participating in the online survey.
At the end of the online survey, you will have the option to receive a summary of the results when they become available and/or to be contacted for an interview and/or for future research purposes in the field of STXBP1-related disorders. If you select at least one of these options, you will be asked to provide contact information in a separate contact form which disconnects this information from the answers you have previously provided in the online survey. Therefore, your answers in the online survey and contact information cannot be combined. Before you decide to provide such information, you will be asked to agree to a separate data protection policy.
How do we use the online survey results?
The pseudonymyzed individual results of the online survey will be extracted from the Momentive survey platform and analyzed by admedicum and our customer, Encoded Therapeutics. All data will be pseudonymous and at no point will information be shared that may potentially identify you or the person living with STXBP1.
Pseudonymyzed means that the data cannot be attributed to a specific person without the use of additional information, provided that such additional information is kept separately, and measures are in place to prevent identification of the person unless this is permitted by law. (For instance, to respond to a request from the person whose data it is or if required for the safety of the person). The data you provide in this online survey cannot be traced back to by applying standard technology (e.g. your IP address will not be tracked). Therefore, your personal identity could only be determined by combining the survey data with additional information from another source (e.g. your doctor may recognize you due to the rarity of this disease). However, neither we at admedicum nor our client, Encoded Therapeutics, will at any point combine these data, even if we become aware of such possibility.
All pseudonymyzed data will be then shared with Encoded Therapeutics and the STXBP1 Foundation. The parties will adduce adequate safeguards to protect data that is transferred outside Europe in accordance with the GDPR.
Aggregated results from this survey may be shared by Encoded Therapeutics or the STXBP1 Foundation with regulatory authorities (e.g. US Food and Drug Administration [FDA]), European Medicines Agency (EMA), or other regulatory authorities, as applicable) to help inform clinical development of potential new therapies. Aggregated means that data are grouped together in such a manner that they cannot be related to an identified or identifiable person.
At a future time, aggregated results may also be used to support discussion with other government or private bodies (e.g., health technology assessment authorities or medical insurance companies) to support access to new therapy following regulatory approval. Aggregated results may also be shared with clinicians and scientists through a report, publication, or other means to help guide future research. Aggregated results may also be shared with the broader STXBP1 community through other means, such as a webinar hosted by the STXBP1 Foundation.
The personal data you provided will be deleted from the online platform, Momentive, within 3 months following the end of the research project.
The data will be extracted by admedicum and stored on a separate server from Momentive for a period of 5 years to allow us the opportunity to pursue questions on the same subject and customer in the future or, in the event of a legal dispute, to prove that the work we have completed for our customer is based on correct data collection and evaluation. Under no circumstances will your data be used for purposes other than those described in this information notice.
By storing your data 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.
What rights do you have regarding your data?
Your participation in the online survey is entirely voluntary. However, once you answer a question, you cannot revoke your consent to use the data collected because we cannot trace back and single out the data that belongs to you. You may withdraw your consent and do not need to provide a reason for your withdrawal. If you withdraw your consent, we will re-identify your responses and remove them from our database so they will not be used after your withdrawal. However, if your data or the data regarding your child or person in your care has been aggregated, we may use these aggregated data which is anonymous.
If you have any questions regarding data protection, please contact our data protection officer indicated above. According to Article 77 of the GDPR, data subjects in the EU/EEA have the right to lodge a complaint with a supervisory authority, usually the respective data protection authority of the local jurisdiction in which you reside. If you reside in the US, you may file an online complaint at the Office of Human Rights at https://ocrportal.hhs.gov/ocr/smartscreen/main.jsf.