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Privacy Policy

Information for Parents and Legal Guardians of MDS Patients on the MECP2 Duplication Syndrome Patient Registry and Survey Platform (REMEDS Platform) and Privacy Notice
Effective Date: 30.04.2025 

Dear Parents and Legal Guardians and MDS Patients, 

Your child or ward (in the following “child”) has been diagnosed with MECP2 Duplication Syndrome (MDS). MDS is very rare and can present with different clinical symptoms that may vary from patient to patient. The reason for this variability is unclear and subject to further research primarily on differences in genetic findings. 

To better map the clinical presentation to the genetic variations and to expand knowledge about MDS it is important for rare diseases to be documented in a registry (a database). It is for this reason that the REMEDS Platform has been established. 

The entry of your child´s data in the registry of the REMEDS Platform does not affect the course of your child’s treatment or follow-up care. No additional therapies, medications, or tests will be prescribed. We take care that neither your nor your child’s identity can be traced. 

A prerequisite for entering your child’s data into the registry of the REMEDS Platform is your consent as a parent or legal guardian. Without your consent, your child´s data cannot be collected. You can withdraw your consent at any time without any impact on care or treatment.  

Please read the following text carefully as a supplement to a possible discussion with the doctor in charge of your child’s treatment, and do not hesitate to ask questions. Please give your consent only if: 

    • you have fully understood everything; 

    • you are willing to consent to your child’s participation in the registry; and 

    • you are aware of your child´s rights as a participant in this registry. 

1. What is the purpose of the REMEDS Platform? 

The REMEDS Platform is operated by Verein zur Unterstützung von Kindern mit MeCP2 Duplikation Syndrom, kurz: Lasst uns MDS heilen, a not-for-profit association under Austrian law (DupMECP2 – Lasst uns MDS heilen), and supported by Kepler Universitätsklinikum, located in Linz, Austria (Kepler University Hospital).  

The REMEDS Platform serves the purpose to collect, store, and analyze clinical and medical data of MDS patients from Austria or outside Austria in a global database, including genetic findings, as well as information on family-specific issues, with the aim to support scientific research, enhance clinical understanding and improve treatments of MDS. 

Registration of a patient with MDS on the REMEDS Platform allows interested parties to submit data.  

2. How does registration for the REMEDS platform work? 

After creation of a user account with the REMEDS Platform, you will be able to register a patient with MECP2 Duplication Syndrome. You are asked to provide information on the patient (patient´s name, date of birth, gender, nationality, country of residence, if your patient is deceased or not, upload patient’s genetic report, email address for notification, confirmation of user, caregiver/legal guardian to be permitted to upload the data) to prove eligibility of the patient to enter REMEDS registry. 

After submission of the patient registration request, an approval process starts by a REMEDS doctor. The approval process lasts 90 calendar days at a maximum. After 90 days, the data provided during registration (see previous sentence) will be automatically deleted (if not yet manually deleted by the REMEDS doctor after approving or denying the patient’s registration request). During the review process REMEDS doctors will have secure access to the data provided. Upon approval of a patient, an ID-number will be attributed to the patient that will be used for all subsequent studies in which the patient will participate via the REMEDS Platform.  

The uploaded genetic report will be deleted after termination of the approval process. Personal data (gender, nationality, country of residence and date of birth) provided during the patient registration process, will be automatically anonymized by the REMEDS Platform in order to be used for statistical purposes. Your child’s name and the status of registration (but not any sensitive health data) will be only visible to you on your own dashboard and to the REMEDS Platform administrators for platform operation.  

Once an MDS patient is approved, a section listing currently ongoing studies will show in your dashboard. However, participation in any specific (clinical) study will require separate consents, patient information and privacy documentation. 

3. What are the benefits of registration for the REMEDS platform? 

It is not expected that your child will experience any direct health benefits from participation in the REMEDS Platform. 

4. Are there any risks, complaints, or side effects? 

No, as only data is collected. 

5. Termination of participation of registration on the REMEDS Platform? 

The participation can be withdrawn at any time without giving a reason. 

6. Are there any costs for participants? 

Participation in the REMEDS Platform does not incur any additional costs, and no reimbursements will be provided for entering the data. 

7. Opportunity for further questions 

For any questions regarding the REMEDS Platform you may contact: David Covini, President of DupMECP2 -Lasst uns MDS heilen and Caroline Covini, Vice-president of DupMECP2 – Lasst uns MDS heilen 

Premreinergasse 13  

1130 Vienna, Austria 

Email: office@remeds.org  

8. Privacy Information pursuant to Art 13 General Data Protection Regulation 

The REMEDS Platform serves the purpose to collect, store, and analyze clinical and medical data of individuals with MDS from Austria or any other countries of the world. This includes the collection, pseudonymization or anonymization of data from individuals with MDS and their families with the aim to support scientific research, enhance clinical understanding and improve treatment options for MDS.  

We are committed to protecting the privacy and security of personal data collected from MDS patients, caregivers, and legal guardians. This Privacy Information explains how personal data are collected, processed, and stored in compliance with the General Data Protection Regulation (GDPR) and other applicable data protection laws. 

Users of the REMEDS Platform must consent to the collection and processing of data by separate informed consent for each study they wish to participate. 

A distinction must be made between: 

    1. Personal data, from which a person can be directly identified (e.g., name, date of birth, address, social security number, photos, etc.). 

    1. Pseudonymized personal data, where all information that allows direct identification of the person is either removed, replaced by a code (e.g., a number), or obscured (e.g., blurring in photos).  

    1. Anonymized data, where the possibility of associating the data with a specific person is entirely excluded. 

8.1. Who is responsible for processing your data?  

Data Controller: 

Verein zur Unterstützung von Kindern mit MeCP2 Duplikation Syndrom, kurz: Lasst uns MDS heilen, ZVR-Zahl (registration number with the Austrian central association registry): 1165516180 

Contact: David Covini, President of DupMECP2 -Lasst uns MDS heilen and Caroline Covini, Vice-president of DupMECP2 – Lasst uns MDS heilen 

Premreinergasse 13, 1130 Vienna, Austria 

Email: office@remeds.org 

8.2. Purpose of data collection 

We collect and process personal data A) for the creation of a user account on the REMEDS Platform, B) for registration of patient with MDS on the REMEDS Platform, C) for surveys and studies, D) for scientific research and publications, and to propose studies to participate as test persons

    • to confirm inclusion of patient data with MECP2 Duplication Syndrome (MDS) only in the database, 

    • to improve understanding and treatment of MDS, 

    • to further research in MDS and related syndromes and their treatment. 

The data will be available for all research questions, not limited to epilepsy, such as exploring the causes of certain diseases (e.g., heart diseases, cancer, or psychiatric disorders), developing new scientific methods. 

8.3. Data we collect for the following purposes 

We may collect the following personal data for the purpose of  

A. For account creation with the REMEDS platform 

    • Personal Information of user (caregiver, legal guardian): E-Mail address, UserID, first name, last name, date of birth. 

B. For registration on REMEDS Platform 

    • Personal Information: patient´s name, date of birth, nationality, country of residence, if the patient is deceased or not, confirmation of user to be permitted to upload the data. 

    • Medical Data: Genetic report. 

    • Personal Information of registrant (caregiver, legal guardian): E-Mail address, UserID, first name, last name, date of birth. 

C. For surveys and studies 

    • Medical history, symptoms, treatments, date of diagnosis, place of diagnosis.

    • Clinical data. 

D. For scientific research and publications and to propose studies to participate as test persons

    • Medical history, symptoms, treatments, age. 

    • Pseudonymized/Anonymized clinical data used for scientific research. 

Data that we did not receive pseudonymized or anonymized will be pseudonymized or anonymized. 

We collect only personal data necessary for the purposes of the REMEDS Platform. 

8.4. How we process your data 

    • Data Encryption: Personal data is encrypted and stored securely. 

    • Pseudonymization/Anonymization: Identifiable data is replaced with a code before research use. The code is stored with a REMEDS doctor at Kepler University Hospital and the REMEDS Platform administrator responsible for IT matters. If anonymization is sufficient to fulfill the purposes, we anonymize identifiable data. 

    • Controlled Access: Access on a strict need-to-know basis. 

    • No Commercial Use: Data is not sold or shared for commercial purposes in order to make profits. Reimbursement may be asked to cover costs associated with the REMEDS Platform. 

    • Consent: Personal data will never be shared without prior explicit (informed) consent. 

8.5. Legal basis for processing data 

We process data for all the purposes mentioned under 8.3. based on: 
Explicit consent (Art. 6(1)(a) and Art 9(2)(a) GDPR) or Performance of a contract (Art.6(1)(b) GDPR) or Legal obligations (Art. 6(1)(c) GDPR) or Legitimate interest (Art. 6(1)(f) GDPR) when required by law or ethical committees. 

If completely anonymized data are provided, we do not need any consent for processing them.  

8.6. Who has access to your data? 

Your personal data is only accessible by: 

    • Authorized medical professionals at Kepler University Hospital for diagnosis confirmation for purpose B) for registration on REMEDS Platform in order to approve patients and for purpose D) to propose studies to participate as test person. 

    • REMEDS Platform administrators for platform operation (to all data but only to pseudonymized/anonymized data) and for purpose A) for account creation with the REMEDS platform to all data mentioned under 8.3.A and for purpose B) for registration on REMEDS Platform as mentioned under 8.3.B (restricted to REMEDS administrator responsible for IT matters).

    • Approved scientific researchers (only to pseudonymized/anonymized data) for purpose C) surveys and studies in order to review them and for purpose D) for scientific research and publications. 

    • Regulatory authorities, ethic commissions, if legally required. 

    • Private-sector companies for scientific research purposes upon approval with REMEDS Platform Advisory Board (only to pseudonymized/anonymized data) for purpose C) surveys and studies in order to review them and for purpose D) for scientific research and publications. 

    • People involved in MDS like MDS patients, parents, legal guardians (only to anonymized data) for purpose C) surveys and studies in order to review them and learn more about MDS. 

8.7. Data retention & deletion 

We retain data for the duration of the REMEDS Platform, or as required by law or until you revoke your consent whatever is earlier. 

    • Identifiable data can be deleted upon your request. 

    • Pseudonymized data may be retained for ongoing scientific research. 

    • Anonymized data is retained indefinitely for scientific purposes. 

You may request deletion of your child’s personal data at any time. Upon your request for deletion, no personal data will be further collected in the future. However, pseudonymized or anonymized data that has already been collected may continue to be stored and used for the purposes of the REMEDS Platform.  

8.8. Your rights under GDPR 

You have the following rights regarding your data: 

    • You can request a copy of your stored data. 

    • You can request corrections to inaccurate data. 

    • You can request deletion of your identifiable data, unless retention is required by law. 

    • You can limit how your data is processed. 

    • You may withdraw at any time, and no further data will be collected. 

    • You can request your data in a structured format. 

To exercise these rights, please contact: office@remeds.org 

If you believe your data is being misused, you have the right to lodge a complaint with the Austrian Data Protection Authority: 

    • Email: dsb@dsb.gv.at 

8.9. Data security measures 

We apply industry-standard security to protect your data, including: 

    • Encryption & Secure Storage: Data is stored on the REMEDS Platform server that is situated within the European Union (Austria) with high-level encryption. 

    • Limited Access: Only authorized personnel can view identifiable data on a need-to-know basis. A person granted access to the REMEDS Platform is obligated not to attempt to identify any person. 

    • Data Breach Protocols: In case of a breach, authorities and affected participants will be notified as required by GDPR. 

    • Pseudonymization: Pseudonymization means that a code is assigned to your personal data and conclusions can be drawn to your identity only by using the code which is held by Kepler University Hospital and REMEDS Platform administrator responsible for IT matters. Data will only be shared in pseudonymized or anonymized form. Publications will also only use pseudonymized or anonymized data. 

8.10. Cookies & tracking technologies 

The REMEDS Platform does not use tracking cookies for personal data collection. Only essential cookies are used for platform functionality. 

8.11. Data transfer outside of the EU 

In the context of the REMEDS Platform, a transfer of pseudonymized data or anonymized data to countries outside the EU (third countries that do not grant a comparable level of protection as under the GDPR) may take place. Appropriate safeguards will be put in place to ensure that your child’s data is protected in accordance with the GDPR. These safeguards may include the use of standard contractual clauses or other mechanisms designed to ensure that data protection standards are maintained when transferred to third countries. 

8.12. Changes to this Privacy Information 

We may update this Privacy Information periodically. Changes will be communicated through the REMEDS Platform website and email notifications.  

8.13. Contact information 

For any data protection inquiries, you can contact us at: 

Email: office@remeds.org 

Address: Premreinergasse 13, 1130 Vienna, Austria 

Phone: +43 678 1215837 

8.14. Service providers

The REMEDS Platform is using by Jotform as service provider.