MECP2 DUPLICATION PATIENT REGISTRY AND SURVEY PLATFORM (REMEDS Platform)
Welcome to the MECP2 Duplication Syndrome Patient Registry and Survey Platform called REMEDS or REMEDS Platform.
PLEASE READ THE FOLLOWING INFORMATION CAREFULLY.
In accessing the REMEDS Platform you represent that you are at least eighteen (18) years of age, or the age of majority in your state, province, or country, or have the legal authority to act on behalf of a minor or an adult unable to act for themself, and you acknowledge that you understand and accept the following terms and conditions.
By accessing or participating in the REMEDS Platform, you agree to comply with and be bound by the following terms and conditions (“Terms”). IF YOU DO NOT ACCEPT THESE TERMS AND CONDITIONS, YOU MAY NOT ACCESS THIS SITE OR UTILIZE ANY OF THE SERVICES PROVIDED ON OR THROUGH THIS SITE.
The REMEDS Platform is a project of 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), which is supported by Kepler Universitätsklinikum, located in Linz, Austria (Kepler University Hospital). The purpose of the REMEDS Platform is to collect, store, and analyze clinical and medical data for individuals with MECP2 Duplication Syndrome (“MDS”) to support scientific research, enhance clinical understanding and improve treatments. While registration of a patient allows you among others to submit data for the REMEDS Platform, participation in any specific study will require explicit informed consent of the participant through separate documentation.
Data handling adheres to the highest standards of security and privacy. Identifiable data will not be shared with third parties without the registrant’s express consent. However, DupMECP2-Lasst uns MDS heilen may allow researchers, pharmaceutical companies, regulatory bodies, and other approved third parties (mainly MDS patients) to search and access pseudonymized or anonymized information. See for further details Information for Parents and Legal Guardians of MDS Patients.
Use of the REMEDS website (the “Website”) and the REMEDS Platform is governed by the following Terms.
By using the Website, you represent that you accept and agree that you have read the Terms, and that you accept these Terms. If you do not agree to be bound by the Terms, you may not submit data to the Website or otherwise use the Website.
DupMECP2-Lasst uns MDS heilen has established REMEDS Platform and is responsible for its creation, operation, maintenance, data storage and overall purpose. All pages within the Website are owned by DupMECP2-Lasst uns MDS heilen who holds all exclusive ownership rights in all parts of the Website capable of being protected and in all data submitted to REMEDS Platform. DupMECP2-Lasst uns MDS heilen holds ownership of all intellectual property rights and know-how in REMEDS Platform, including but not limited to all copyrights, that would enable the REMEDS Platform to be reproduced, recreated, or recompiled, including the standard program templates. DupMECP2-Lasst uns MDS heilen has the right to edit and delete any portion of the Website and the REMEDS Platform.
You agree that content contained on, and the intellectual property by which the Website/REMEDS Platform is produced may not be modified, copied, distributed, framed, republished, downloaded, displayed, or sold in any form or by any means, in whole or in part, without the prior written consent and approval of DupMECP2-Lasst uns MDS heilen.
a. Legal capacity
You may use this Website to register for inclusion in REMEDS Platform if you are a parent, caregiver, or legal guardian who is at least eighteen (18) years of age (or the age of majority in your state, province, or country of your residence), fully able and competent to enter into legally binding agreements, and capable of providing consent to share your own personal and health data as well as that of the affected MDS patient.
b. Voluntary participation
Participation in the REMEDS Platform is entirely voluntary. At any time, you have the right to withdraw your participation. See for further details Information for Parents and Legal Guardians of MDS Patients.
c. Lawful use
You agree to refrain from prohibited conduct, defined here as any conduct that: i) is abusive, harassing, or otherwise harmful to DupMECP2-Lasst uns MDS heilen, or any other party or property; (ii) violates or tries to violate another party’s right to privacy, or; (iii) seeks to disrupt the use or operation of the REMEDS Platform/Website. You also agree that: i) you will not submit data that you know or believe to be is false, fraudulent, inaccurate, incomplete or misleading; ii) you will not knowingly submit data from a computer that you know or believe may contain any viruses, Trojan horses, worms, time bombs, spiders, or other computer programming routines that may damage, detrimentally interfere with, surreptitiously intercept or expropriate any system, data or personal information. In addition, you will not use the REMEDS Platform/Website to make any defamatory, libelous or threatening statements or knowingly use it to generate any spam.
d. Website for allowable activities (defined herein) only
REMEDS Platform/Website is for the use of registered and authorized users only. The Terms control the use of all data within the REMEDS Platform/Website. You may not attempt (i) to gain unauthorized access to REMEDS Platform/Website or any services, other accounts, computer systems, or networks connected to any server, (ii) to get access to REMEDS Platform/Website through hacking, password mining, or any other means, (iii) to obtain or attempt to obtain confidential, proprietary, and/or personal information stored on REMEDS Platform/Website; (iv) distribute passwords to unregistered or unauthorized users; or (v) make any unauthorized use of REMEDS Platform/Website or information accessible on REMEDS Platform/Website.
e. International users
The REMEDS platform is governed by the data protection laws of the European Union, including the General Data Protection Regulation (GDPR).
Access to the Website is undertaken at your own risk, and you are solely responsible for compliance with your local laws and regulations.
a. Security
You are solely responsible for the security of your password and your account and are fully responsible for all activities that occur under your password or account with or without your knowledge. You may not knowingly provide your login and password information to another person. You agree to immediately change your password and notify REMEDS Coordinator via email at office@remeds.org of potential unauthorized use of your password or account or any other breach of security. DupMECP2-Lasst uns MDS heilen will not be liable for any loss or damage arising from your failure to comply. DupMECP2-Lasst uns MDS heilen reserves the right to deny or revoke access to the REMEDS Platform/Website, in whole or in part, if DupMECP2-Lasst uns MDS heilen reasonably believes that you are in breach of these Terms or are otherwise using or accessing the REMEDS Platform/Website in any manner inconsistent with the Terms.
b. User submitted content
You are solely responsible for and will exercise caution, discretion, common sense, and judgment in using and accessing REMEDS Platform/Website and all content contained therein or provided. Content that is unacceptable, inappropriate, or not in compliance with these Terms may result in termination of User’s access to the REMEDS Platform/Website.
You are responsible for any content you post, publish, display, upload or otherwise transmit to the Website/REMEDS Platform. You agree not to transmit or otherwise make available on the Website/REMEDS Platform any personal information of any other individual or any material protected by copyright, trademark, publicity, privacy, or other proprietary right without the express permission of such individual or the owner of such rights, respectively. The burden of determining that transmission of the information is permissible, or that the material is not protected by such rights, is on you, the user.
You further agree that you report abuses of the Website/REMEDS Platform to the REMEDS Coordinator via email at office@remeds.org with sufficient detail identifying the abusive conduct or content, so that DupMECP2-Lasst uns MDS heilen may determine, in its sole discretion, whether to take action with respect to such alleged abuse.
c. Cooperation
You agree to cooperate fully with DupMECP2-Lasst uns MDS heilen to investigate any suspected or actual activity that is in breach of these Terms.
d. Research studies
Research studies available through REMEDS Platform may include observational, genetic, or clinical studies aimed at advancing the understanding of MDS. Participants will always receive detailed information and a separate informed consent form before choosing to participate in any specific study.
e. Risk of using the website
You acknowledge and agree that any uploads or transmission you make to, from, or through the Website/REMEDS Platform may be intercepted and used by an unauthorized third party. DupMECP2-Lasst uns MDS heilen will take all reasonable efforts to avoid such unauthorized third-party use.
f. Links to other websites
Website may contain links to related websites. The inclusion of any link does not imply endorsement by DupMECP2-Lasst uns MDS heilen. It is up to you to take precautions to ensure that whatever you select for your use is free of viruses, worms, Trojan horses, and other items of a destructive nature or not infringing third-party rights.
Answering questionnaires, survey or forms, or any type of study on REMEDS Platform/Website does not guarantee participation in a study, or direct access to care.
All Website/REMEDS Platform content is for informational purposes only and is not intended to be a substitute for independent professional medical judgment, advice, diagnosis, or treatment. Any questions regarding your health, or your child’s health should be directed to your physician or a qualified health provider, and you should neither disregard nor delay seeking medical advice relating to treatment or standard of care because of information featured on or transmitted through the Website/REMEDS Platform.
There is no warranty that the Website/REMEDS will be uninterrupted or error-free or that defects of the Website/REMEDS Platform will be corrected, that any information contained on or transmitted through the Website/REMEDS Platform is complete, accurate or up-to-date, that user or other information will be completely secure from unauthorized access or disclosure, or that any information is free of viruses or other rogue programming.
You shall indemnify and hold harmless DupMECP2-lasst uns MDS heilen for any inappropriate or illegal use of the Website/REMEDS Platform.
You agree that DupMECP2-Lasst uns MDS heilen has neither responsibility nor liability for the deletion or failure to store any messages and other communications or other content maintained or transmitted by the Website. You acknowledge that DupMECP2-Lasst uns MDS heilen reserves the right to log off accounts that are inactive for an extended period of time.
DupMECP2-Lasst uns MDS heilen may disclose, or be required to disclose, certain information if they have a good faith belief that such disclosure is required by applicable law. In any other cases the data and information collected over the Website/REMEDS Platform shall be kept confidential by you and DupMECP2-Lasst uns MDS heilen.
You agree that your account and access to the Website/REMEDS Platform may be immediately terminated, with or without cause and without prior notice. Without limiting the foregoing, the following will lead to a termination of a user’s use of the Website/REMEDS Platform: (a) breaches or violations of these Terms, (b) requests by law enforcement or other government agencies, (c) a request by you (self-initiated account deletions), (d) unexpected technical issues or problems, and (e) extended periods of inactivity.
Termination is in the sole discretion of DupMECP2-Lasst uns MDS heilen and that DupMECP2-Lasst uns MDS heilen shall not be liable to you for any termination of your account or access to the Website/REMEDS Platform.
Upon termination of your account, no new data will be collected, but previously collected data may be retained in pseudonymized or anonymized form.
From time to time, users get notifications of updates and other valuable information about the REMEDS Platform or the Website, and related studies. By using the Website or the REMEDS Platform, users consent to being contacted by DupMECP2-Lasst uns MDS heilen, and to receiving such updates and information.
Any dispute that arises out of these Terms will be governed by and construed in accordance with the laws of Austria, excluding its conflict of law rules. The competent courts in Vienna, Austria, shall have non-exclusive jurisdiction.
DupMECP2-Lasst uns MDS heilen reserve the right to modify or update these Terms at any time. Any changes will be communicated to participants (users) via email or through the Website. Your continued participation in REMEDS Platform following such changes constitutes your acceptance of the updated Terms.
EN 
DE 
FR 
ES 
PT 
IT 
PL 
HU 
EL 
SR 
HR 
TR 
NL 
SV 
TH 
JA