REMEDS FAQ – Frequently Asked Questions

1. What is REMEDS?

REMEDS is a secure, multilingual, GDPR-compliant platform and registry for individuals diagnosed with MECP2 Duplication Syndrome (MDS). It collects medical and
genetic data to support research, improve clinical understanding, and promote better treatments for MDS.

2. Who can use REMEDS?

Parents, caregivers, or legal guardians of someone with MDS can create an account and register a patient. Researchers and healthcare professionals can apply for access to anonymized or pseudonymized data for approved studies.

3. Can I register if I’m already in another registry or study?

Yes! REMEDS is open to anyone with a confirmed diagnosis of MECP2 Duplication Syndrome, regardless of where you live or whether you’re already part of another registry or study.
You can still register and contribute to REMEDS — participation is voluntary, non-exclusive, and designed to complement other research efforts.

4. Is there a cost to participate?

No. Participation in REMEDS is free. No payments or reimbursements are required to register or enter data.

4. What data is collected?

REMEDS may collect:

·        Basic info (e.g., name, birth date, nationality, gender)

·        Genetic report (for registration)

·        Medical history, symptoms, and treatments (via surveys)

·        Your contact and account details

Only the minimum data needed for scientific research or to confirm eligibility is collected.

5. How is my data protected?

REMEDS follows strict security and privacy protocols:

·        All data is encrypted and securely stored on servers in the EU

·        Personal data is separated and pseudonymized or anonymized for research use

·        Only authorized personnel can access identifiable data—and only on a need-to-know basis

·        Your personal data is never sold, and any research access is for non-commercial purposes

6. Who has access to the data?

·        REMEDS administrators: only to pseudonymized/anonymized data

·      REMEDS administrator responsible for IT matters: all data

·        JKU medical staff: for diagnosis review and participant selection

·        Approved researchers: only to pseudonymized/anonymized data

·        Families and public: only to anonymized (never identifiable) data

·        Authorities: if required by law or ethics committees

7. Can pharmaceutical companies see my data?

Only fully anonymized data may be shared with private-sector researchers—and only after approval by the REMEDS Platform Advisory Board. They cannot access your personal or contact details. If a company like Ionis wants to contact families, REMEDS will publish their contact info, and it is up to you to reach out voluntarily.

8. Can I control how my data is used?

Yes. You must give separate consent for each study or survey. Your identifiable data is never shared without your explicit permission.

9. What happens if I withdraw my consent?

You can withdraw at any time. No new personal data will be collected, and any identifiable data will be deleted upon request. Already collected pseudonymized or anonymized data may continue to be used for scientific purposes unless legally restricted.

10. How long will my data be stored?

·        Identifiable data: stored only as long as your account is active or until you request deletion

·        Pseudonymized data: retained for ongoing scientific research

·        Anonymized data: stored indefinitely for research and statistical analysis

11. What are my rights under GDPR?

You have the right to:

·        Access, correct, or delete your data

·        Limit how your data is processed

·        Withdraw consent at any time

·        Request your data in a portable format

·        File a complaint with the Austrian Data Protection Authority (www.dsb.gv.at, dsb@dsb.gv.at)

To exercise your rights, email office@remeds.org

12. Will my data be transferred outside the EU?

Possibly. Pseudonymized or anonymized data may be shared outside the EU, but only with strong safeguards (e.g., standard contractual clauses) to ensure compliance with GDPR.

13. Does REMEDS use cookies?

Only essential cookies are used to support platform functionality. REMEDS does not use tracking cookies or collect personal data via cookies.

14. Who runs REMEDS?

REMEDS is operated by the non-profit association:
“Verein zur Unterstützung von Kindern mit MECP2 Duplikation Syndrom (Lasst uns MDS heilen)” in collaboration with Kepler University Hospital, Linz, Austria.

15. Who can I contact with questions?

Email: office@remeds.org
Address: Premreinergasse 13, 1130 Vienna, Austria
 Phone: +43 678 1215837