REMEDS: The international registry for patients with the syndrome

We invite all MDS families to be part of REMEDS, the REgistry and MEDical Survey platform for people affected by MECP2 Duplication Syndrome (MDS).

REMEDS is a secure, multilingual platform where you can:

• Register your child or a relative affected by MDS
• Share valuable information about the syndrome that contributes to research and the improvement of care and treatments
• Stay informed about new studies and surveys you can take part in

All data is fully protected and anonymized — and you always remain in control of what you share. REMEDS complies with the highest GDPR standards and medical data security requirements.

It was created together with doctors from Johannes Kepler University Hospital in Austria, with advice from specialists such as Dr. Davut Pehlivan and Prof. Hilde Van Esch, and based on the needs expressed by families. The platform was made possible thanks to the support of Ionis and validated by a lawyer specialized in data protection.

Why join REMEDS?
Because your story matters. Every participation helps research better understand the syndrome, assess care pathways, work towards better treatments and support services, and understand the geographical distribution of families around the world.

Registration – How it works
To join REMEDS, please follow these steps:
1) Create a user account on REMEDS.org — registration is securely done via your email address.
2) Register your child by providing medical information and submitting proof of diagnosis (for example, a genetic test report or a medical certificate).
3) After review and approval by the REMEDS medical team, you will be able to manage your child’s data and take part in ongoing surveys.

If you have any questions or need assistance, feel free to email us at office@remeds.org — we will guide you step-by-step.