MECP2 DUPLICATION PATIENT REGISTRY AND SURVEY PLATFORM (REMEDS)
Welcome to the MECP2 Duplication Syndrome Patient Registry and Survey Platform called REMEDS (“Registry”).
PLEASE READ THE FOLLOWING INFORMATION CAREFULLY.
In utilizing this service, 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 express 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 Registry, 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 MECP2 duplication patient registry and survey platform (REMEDS) is a joint project of DupMECP2-Lasst uns MDS heilen (Austria) and Johann Kepler University Hospital (Austria). The purpose of the REMEDS platform is to collect, store, and analyze clinical and medical data for individuals with MECP2 Duplication Syndrome. This includes the collection of pseudonymized data from patients and their families to support scientific research, enhance clinical understanding, and improve treatments. While registration allows you to submit data for the Registry, participation in any specific study will require your explicit consent through separate documentation. The REMEDS ensures all data handling adheres to the highest standards of security and privacy
Use of the REMEDS website (the “Website”) and the services associated with the REMEDS website (the “Services”) is governed by the following terms and conditions herein (the “Terms and Conditions”). All pages within the Website are owned by DupMECP2-Lasst uns MDS heilen and DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital jointly own and retain ownership of all data submitted to REMEDS.
The purpose of the Website is to allow individuals, families, and medical and research providers to enter certain information to REMEDS. The voluntary information provided by the registrant during registration, is maintained in a secured database and identifiable data will not be shared outside Johann Kepler University Hospital without the registrant’s express consent. However, DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital may allow researchers, pharmaceutical companies, regulatory bodies, and other approved third parties to search and access pseudonymized information.
By using the Website, you represent that you accept and agree that you have read all of the Terms and Conditions, and that you agree to accept these terms. If you do not agree to be bound by the Terms and Conditions, you may not submit data to the Website.
DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital jointly own all personal data submitted to this Website, including personal, identifiable data and metadata collected through REMEDS, along with all Intellectual Property Rights thereto. However, access to raw data (including identifiable information) is exclusively restricted to Johann Kepler University Hospital. Pseudonymized data is jointly owned and accessible by both Johann Kepler University Hospital and DupMECP2-Lasst uns MDS heilen.
DupMECP2-Lasst uns MDS heilen has established REMEDS and is responsible for its creation, operation, maintenance, data storage and overall purpose. DupMECP2-Lasst uns MDS heilen owns and retains ownership of all Intellectual Property Rights in REMEDS Platform, including the core data set, and any and all material 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 this website.
To facilitate research and improve treatment options for MECP2 Duplication Syndrome, pseudonymized data (data stripped of direct identifiers, ensuring it cannot easily be linked back to an individual) may be shared with approved third parties, such as researchers, pharmaceutical companies, and regulatory bodies. Pseudonymized data is jointly owned by DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital and may shared only with entities that adhere to strict national data protection regulations, the EU General Data Protection Regulation (GDPR) and confidentiality agreements. Participants’ personal, identifiable information will never be shared without their explicit consent.
Pseudonymized data may also be used for broader research purposes beyond MECP2 Duplication Syndrome, such as studying other diseases or developing new scientific methods. Such usage will only occur with your explicit consent during the specific study.
You may use this Website to register for inclusion in REMEDS 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), fully able and competent to enter into legally binding agreements, and capable of providing consent to share your own personal and health information as well as that of the affected patient. By using this Website, you agree to be bound by these Terms and Conditions.
Participation in the Registry is entirely voluntary. At any time, you have the right to withdraw your participation. Withdrawal from the Registry will not affect your or your child’s medical care or treatment. Upon withdrawal, no further data will be collected, and you may request the removal of your identifiable data from the Regristry. However, data that has already been pseudonymized or anonymized may be retained and used for research purposes in compliance with legal and ethical standards.
Participants in REMEDS have the right to access the personal and health information they have provided. Additionally, participants have the right to request corrections to any inaccurate or incomplete information they have provided. To exercise these rights, participants should contact the REMEDS Coordinator at office@remeds.org. Requests will be processed in compliance with applicable data protection laws and within a reasonable timeframe.
If you register to use the Website, you agree to provide true, accurate, and complete registration information.
By accepting these terms and conditions, you agree to refrain from prohibited conduct, defined here as any conduct that: i) is abusive, harassing, or otherwise harmful to REMEDS, DupMECP2-Lasst uns MDS heilen or Johann Kepler University Hospital, 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 this Platform. You also agree that: i) you will not submit data that you know or believe to be is false, fraudulent, inaccurate 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 Platform to make any defamatory, libelous or threatening statements or knowingly use it to generate any spam.
REMEDS website is for the use of registered and authorized users only. The Terms and Conditions control the use of all data within the Website. You may not attempt to gain unauthorized access to this Website or any services, other accounts, computer systems, or networks connected to any server or to any of the Services, through hacking, password mining, or any other means.
The REMEDS platform is governed by the data protection laws of the European Union, including the General Data Protection Regulation (GDPR). By using this Website, you acknowledge and agree that your personal data will be collected, processed, and stored in accordance with GDPR, regardless of your country of residence.
If you access the Website from outside the European Union, you are responsible for ensuring compliance with any additional local laws applicable to your use of the Website. REMEDS does not guarantee that the content or services available on this Website are appropriate or lawful outside the EU. Access to the Website is undertaken at your own risk, and you are solely responsible for compliance with your local laws and regulations.
Submitting data to REMEDS is entirely free. There is no cost for registration, using the platform, or maintaining information in your account.
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 and Johann Kepler University Hospital will not be liable for any loss or damage arising from your failure to comply. Certain portions of the Website and information contained on the Website may be accessible only to authorized registered users or to affiliates, service providers, or other business partners of DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital, or may otherwise be password restricted. You agree not to (i) gain or attempt to gain unauthorized access to such portions of the Website or to information contained in such sections of the Website; (ii) obtain or attempt to obtain confidential, proprietary, and/or personal information stored on the Website; (iii) distribute passwords to unregistered or unauthorized users; or (iv) make any unauthorized use of the Website or information accessible on the Website. DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital reserve the right to deny or revoke access to the Services, in whole or in part, if DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital reasonably believes that you are in breach of these Terms and Conditions or are otherwise using or accessing the Services in any manner inconsistent with the Terms and Conditions.
You are solely responsible for and will exercise caution, discretion, common sense, and judgment in using and accessing both the Platform and the Website and all content contained therein. Content that is unacceptable, inappropriate, or not in compliance with these Terms and Conditions may result in termination of User’s access to the Platform and to the Website.
You are responsible for any content you post, publish, display, or otherwise transmit to the Website. You agree not to transmit or otherwise make available on the Website 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 understand and acknowledge that you may be exposed to information that is inaccurate or otherwise objectionable, and you may report abuses of the Website to the REMEDS Coordinator 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.
You agree to cooperate fully with DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital to investigate any suspected or actual activity that is in breach of these Terms and Conditions.
Research studies available through REMEDS may include observational, genetic, or clinical studies aimed at advancing the understanding of MECP2 Duplication Syndrome. Participants will always receive detailed information and a separate consent form before choosing to participate in any specific study.
The value and relevance of the information provided by REMEDS is directly linked to the information provided by users. It is your responsibility to provide complete, accurate, and updated information to the Website while filling questionnaires, and/or forms.
You acknowledge and agree that any uploads or transmission you make to, from, or through these means may be intercepted and used by an unauthorized third party and that all of the risk associated with these activities is solely yours.
REMEDS may contain links to related websites. The inclusion of any link does not imply endorsement by REMEDS, DupMECP2-Lasst uns MDS heilen or Johann Kepler University Hospital. 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.
While participation in the REMEDS registry is not expected to provide direct health benefits to you or your child, it contributes to advancing research and improving understanding of MECP2 Duplication Syndrome, which may help develop better treatments and care options in the future.
Answering questionnaires, survey or forms, or any type of study on REMEDS does not guarranty the participation to a study, or direct access to care. It is not expected that you or your child will experience any direct health benefits from participation in this Registry.
All website 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.
There is no warranty that the website will be uninterrupted or error-free or that defects in the website will be corrected, that any information contained on or transmitted through the website is complete, accurate or current, 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.
Neither DupMECP2-lasst uns MDS heilen nor Johann Kepler University Hospital shall be liable to any third-party arising from your inappropriate use of the website or platform, as set forth in section 3 and section 4, above.
You agree that content contained on, and the intellectual property by which the Website 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, as applicable, for a particular purpose.
You agree that neither the DupMECP2-Lasst uns MDS heilen NOR Johann Kepler University Hospital has any responsibility or 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 the REMEDS reserves the right to log off accounts that are inactive for an extended period of time. You further acknowledge that the REMEDS reserves the right to modify these general practices and limits from time to time.
You agree that the Terms and Conditions governs the collection, use and sharing of personal and non-personal information from you when using the Website. DupMECP2-Lasst uns MDS heilen and/or Johann Kepler University Hospital may disclose, or be required to disclose, certain information if they have a good faith belief that such disclosure is required by applicable law.
REMEDS, DupMECP2-Lasst uns MDS heilen and Johann Kepler University Hospital are committed to protecting the privacy and confidentiality of participant data in accordance with data protection laws, including the General Data Protection Regulation (GDPR) for all participants. All data is securely stored and processed in compliance with these regulations to ensure the highest standards of privacy, security, and transparency.
All data collected through REMEDS will only be gathered with your explicit consent, provided separately for each specific study or purpose. The nature of the data to be collected and how it will be used or shared will always be detailed in the consent form of each single study.
Personal, pseudonymized, and anonymized data are handled as follows:
Data in the registry may be retained indefinitely or as required by law, even if you withdraw your participation, to ensure compliance with legal and research obligations. However, no further data will be collected after withdrawal without your explicit consent.
You agree that your account and access to the Website or Services may be immediately terminated, with or without cause and without prior notice. Without limiting the foregoing, the following will lead to a termination by the REMEDS of a user’s use of the Website or the Services: (a) breaches or violations of these Terms and Conditions or Agreement, (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.
Additionally, your study doctor may terminate participation in the Registry if your child no longer meets the inclusion requirements or if continued participation is deemed not in the best interest of your child. This will be communicated clearly and without negative consequences for your child’s medical care.
You agree that all terminations shall be made in the REMEDS’s sole discretion and that neither the DupMECP2-Lasst uns MDS heilen nor Johann Kepler University Hospital shall be liable to you or any third-party for any termination of your account or access to the Website or the Services.
Upon termination of your account, no new data will be collected, but previously collected pseudonymized or anonymized data may be retained for research purposes in compliance with GDPR.
From time to time, the REMEDS or other related entities will notify users of updates and other valuable information about the REMEDS, the Website, and related clinical and research studies. By using the Website or registering or subscribing for services provided on or through the Website, users consent to being contacted by the REMEDS and related entities, and to receiving such updates and information. Users acknowledge and agree that users must always accept email transmissions from the REMEDS, in order to continue to use the Website or the Services.
Any dispute that arises out of the use of the Website or the Services or these Terms and Conditions will first be mediated prior to resorting to other remedies at law or in equity. These Terms will be governed by and construed in accordance with the laws of the jurisdiction where the Registry is operated, without regard to its conflict of law provisions.
The REMEDS reserves the right to modify or update these Terms at any time. Any changes will be communicated to participants via email or through REMEDS website. Your continued participation in REMEDS following such changes constitutes your acceptance of the updated Terms.
If you have any questions about these Terms, your rights as a participant, medical or research-related inquiries, treatment or patient referral questions, or wish to report violations of these Terms and Conditions, please contact the REMEDS Coordinator at: office@remeds.org
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