Terms of Service


    1.1 By registering with us for your Account and clicking to confirm you accept the Terms and/or continuing to use the Reverse Rett Services following our notification of any changes to these Terms, you are agreeing to comply with them.
    1.2 If you do not agree to these Terms, we will not license the App and any documents relating to the App to you.
    1.3 These Terms tell you:
    1.3.1 who we are;
    1.3.2 the terms on which you may use, and we provide, the Reverse Rett Services;
    1.3.3 how changes can be made to your Account, the Reverse Rett Services and these Terms;
    1.3.4 how to close your Account; and
    1.3.5 what to do should you have a problem and other important information.

    2.1 We are Reverse Rett (Reverse Rett, we, us or our). We are a private limited company registered with company number 07278507. Our registered office is located at Suite 1F, Statham Link, Talbot Road, Manchester, M32 0FP.

    3.1 These Terms refer to the following additional terms, which will also apply to your use of the App and the Reverse Rett Services:
    3.1.1 our Privacy Policy which sets out details of how we collect, use and look after your personal data (and that of the Patient) when you use the Reverse Rett Services; and
    3.1.2 our Cookies Policy, which sets out information about the cookies on the App and/or used with the Reverse Rett Services.

    4.1 In these Terms, the following words and expressions shall have the following meanings:
    Account the personal account created within the App and which is used by the User to access and use the Reverse Rett Services;
    App the Reverse Rett web application accessible via [www.reverserett.org.uk];
    Clinical Trial the UK clinical research and study trials provided by third party clinical research and/or pharmaceutical providers in respect of Rett Syndrome, in respect of which the Trial Matching Service is provided, and the term Clinical Trials shall be construed accordingly;
    Condition a condition of these Terms;
    Data Protection Legislation all applicable data protection and privacy legislation in force from time to time in the UK including the UK GDPR; the Data Protection Act 2018 (DPA 2018) (and regulations made thereunder) and the Privacy and Electronic Communications Regulations 2003 (SI 2003/2426) as amended;
    Hospital Passport the PDF version of the Patient Record available for download by the User;
    Intellectual Property Rights any and all copyrights, moral rights, related rights, patents, supplementary protection certificates, petty patents, utility models, trade marks, trade names, service marks, design rights, database rights, website rights, semi-conductor topography rights, domain name rights, rights in undisclosed information, rights in get up, goodwill or to sue for passing off, unfair competition rights, and other similar intellectual property rights (whether registered or not) and applications for any such rights as may exist anywhere in the world;
    Patient the individual who has been diagnosed with Rett Syndrome in respect of whom the User has parental responsibility for and whom the Trial Matching Service is to be provided to;
    Rett Registry Forum the interactive forum facility provided to users of the App to facilitate communication and discussion and accessible via your Account;
    Reverse Rett Services the services, facilities and technologies available via the App including the Rett Registry Forum, the Trial Matching Service, the Patient Record, the Hospital Passport and other services made available by us from time to time;
    Submission text, images, video, audio or other multimedia content, information or materials submitted by the User to the Rett Registry Forum;
    Trial Matching Service the clinical trial matching service facilitated via the App as further described in Condition 8.1;

User Data any data in any form, provided by you to us, including any data uploaded to the App by you or on your behalf, or by you on the behalf of the Patient;
User Personal Data any personal data comprised in the User Data;
User, you, your the individual who creates your Account in order to access and use the Reverse Rett Services, and more particularly, access the Trial Matching Service on the behalf of the Patient;
VAT value added tax chargeable under the Value Added Tax Act 1994 or any other equivalent applicable sales tax in force from time to time;
Virus any thing or device (including any software, code, file or programme) which may: prevent, impair or otherwise adversely affect the operation of any computer software, hardware or network, any telecommunications service, equipment or network or any other service or device; prevent, impair or otherwise adversely affect access to or the operation of any programme or data, including the reliability of any programme or data (whether by re-arranging, altering or erasing the programme or data in whole or part or otherwise); or adversely affect the user experience, including worms, trojan horses, viruses and other similar things or devices.
4.2 The headings in these Terms are for convenience only and shall not affect the interpretation of these Terms.
4.3 A reference in these Terms to:
4.3.1 a person shall include an individual, company, limited liability partnership, corporate firm, partnership, joint venture, association, trusts or unincorporated bodies and associations (whether or not having separate legal personality) and that person's legal and personal representatives, successors or permitted assigns;
4.3.2 the singular shall include the plural and vice versa and a reference to one gender shall be a reference to the other gender and matter and vice versa;
4.3.3 a statute or statutory provision is a reference to it as amended, extended or re-enacted from time to time and such statute or statutory provision shall include any subordinate legalisation made from time to time under that statutory provision;
4.3.4 writing or written excludes fax;
4.3.5 include, including and in particular or anything similar are illustrative only and none of them shall limit the sense of the words preceding or following them and each of them shall be deemed to incorporate the expression without limitation.
5.1 These Terms will come into effect at the time you click the button confirming your acceptance to the same and will continue until your Account is deactivated in accordance with Condition 16. Once you have submitted the required information, we will send you an email requiring you to verify your email address and activate your Account by following the link set out in our email.
5.2 By registering for your Account, you are warranting that:
5.2.1 you are legally capable of entering into a contract with us;
5.2.2 you are at least 18 years old; and
5.2.3 you have parental responsibility for the Patient.
6.1 As part of your Account, you are able to submit information regarding the Patient’s health, previous and current conditions, prescribed medicine, medical history and general personal details in order to create an easily accessible record (the Patient Record).
6.2 The Patient Record functionality is provided to allow you to create one easily accessible place to hold all such information you may require. Any information and/or data which you submit to the Patient Record regarding the Patient’s medication or medical treatment is for your information purposes only and is not intended to operate as a medicinal diary management or reminder function.
6.3 Any third parties you name within the Patient Record (such as the Patient’s school) will not be contacted or provided with access to the Patient Record.
6.4 Save for the type of data listed in Condition 8.1, the information and/or data you submit to the Patient Record is visible by you only and we (or any third party) will not have any visibility or access to such information and/or data.
6.5 As part of the Patient Record, you can select and add a current condition that the Patient is suffering with from the [Rett Disorders Alliance][Rett Syndrome] list, and by doing so access further information regarding such condition, its symptoms, and potential treatments. The information provided via the [Rett Disorders Alliance][Rett Syndrome] list is provided by [the NHS] [third parties] for information purposes only and is not intended to be medical advice that you should rely upon. You remain responsible at all times for seeking medical advice for any treatment the Patient may require in relation to Rett Syndrome or otherwise.
6.6 A full copy of the Patient Record is available for you to download in PDF format as the “Hospital Passport” by simply clicking the [“download”] button.
7.1 We are committed to promoting a supportive and engaging experience for those who use the App, and therefore we provide an interactive service enabling users to connect, communicate and share their experience with other users whose loved ones have also been diagnosed with Rett Syndrome (the Rett Registry Forum).
7.2 We are not obliged to monitor or moderate any Submission submitted to the Rett Registry Forum, however we may remove or edit any Submission in our sole discretion, irrespective of whether the Rett Registry Forum is moderated or not.
7.3 By making a Submission, you grant to us a royalty-free, irrevocable, non-exclusive, transferable licence to use, reproduce, modify, publish, edit, translate, distribute, perform and display the Submission (in whole or in part) on the App.
7.4 You must ensure that any Submission you make to the Rett Registry Forum conforms to standards of accuracy, decency and lawfulness, which shall be applied in our discretion, acting reasonably. In particular, any Submission made by you must be:
7.4.1 lawfully submitted;
7.4.2 factually accurate or your own genuinely held belief;
7.4.3 provided with the necessary consent of any third party;
7.4.4 not defamatory or likely to give rise to an allegation of defamation;
7.4.5 not offensive, obscene, sexually explicit, discriminatory or deceptive; and
7.4.6 unlikely to cause offence, embarrassment, emotional distress or annoyance to others.
8.1 As part of the Reverse Rett Services, we will use the following data from the Patient Record to identify Clinical Trials that the Patient may be eligible to partake in (the Trial Matching Service):
8.1.1 name;
8.1.2 age and date of birth;
8.1.3 ethnicity; and
8.1.4 MECP3 test result (if applicable).
8.2 Where we identify a potential Clinical Trial, we will contact you via email to confirm your interest in the Patient taking part in such trial (the Expression of Interest). The Expression of Interest shall remain capable of response by you for [5] days, whereupon it shall automatically expire. Should you wish to confirm your Expression of Interest after this time, please contact us.
8.3 Where you positively confirm your Expression of Interest in a Clinical Trial pursuant to Condition 8.2, we will contact you via [the App][email] to obtain any further information required relevant to that Clinical Trial for screening purposes. Should the information provided by you at this stage satisfy the relevant requirements of the Clinical Trial, we will notify you that the Patient is eligible to take part in the Clinical Trial and obtain your explicit consent for the sharing of specified User Data relating to the Patient and the User with the clinical trial provider.
8.4 As part of the Reverse Rett Services, Reverse Rett uses its reasonable endeavours to identify when the Patient may be eligible to take part in a Clinical Trial by matching the relevant information contained within the Patient Record to the criteria required for such Clinical Trial. All Clinical Trials are provided by third party clinical research and/or pharmaceutical providers, and therefore Reverse Rett does not warrant or guarantee the success, efficacy, or suitability of such Clinical Trial for the Patient. The User remains responsible at all times for satisfying itself that the relevant Clinical Trial is suitable for the Patient.
8.5 [The App and the Reverse Rett Services are free to use. When Reverse Rett completes a successful match of a Patient to a Clinical Trial, the provider of such Clinical Trial [may] pay Reverse Rett a fee for their referral of a potential candidate].

9.1 You agree to:
9.1.1 use the Reverse Rett Services and submit any Submission in accordance with these Terms;
9.1.2 keep a secure password for your access to and use of the App and your Account; and
9.1.3 do all you can to prevent any unauthorised access to, or use of, the Reverse Rett Services and, if you become aware of any such unauthorised access or use, you will promptly notify us.
9.2 In return for you agreeing to comply with these Terms, we grant you a limited, revocable, non-exclusive, non-transferrable and non-sub-licensable licence to use the Reverse Rett Services for your personal non-commercial use only.
9.3 You agree that you will:
9.3.1 not use the App or Reverse Rett Services in any unlawful manner, for any unlawful purpose, or in any manner inconsistent with these Terms, or act fraudulently, dishonestly or maliciously, for example, by hacking into or inserting malicious code, such as viruses, or harmful data, into the App;
9.3.2 not infringe our Intellectual Property Rights or those of any third party (including our other users) in relation to your use of the App or Reverse Rett Services, including by the submission of any material or a Submission (to the extent that such use is not licensed by these Terms);
9.3.3 ensure that any information, materials or Submission submitted on the App are accurate, complete and not misleading (in each case, in all material respects);
9.3.4 not transmit any material or Submission that is defamatory, slanderous, insensitive, offensive or otherwise objectionable in relation to your use of the App or the Reverse Rett Services;
9.3.5 not distribute, sub-license, sell, rent, lease, loan, provide or otherwise make available the App or the Reverse Rett Services in any form, in whole or party to any person without our prior written consent.
10.1 We may amend or update these Terms from time to time to reflect changes in relevant laws, regulatory requirements, best practice or to deal with additional features which we may introduce to the Reverse Rett Services. We will notify you by email that our Terms have been updated and will aim to give you reasonable notice of any changes and we will also notify you when you next login to your Account following any changes. You are responsible for reviewing these Terms and ensuring that you understand the basis upon which we provide the Reverse Rett Services to you, therefore please check them regularly.
10.2 By continuing to use the App and/or the Reverse Rett Services following our notice of any update to these Terms, you agree to such update and to comply with these Terms as updated or amended. If you do not agree to such update then please do not continue to use the App, access your Account and/or the Reverse Rett Services and take the steps set out in Condition 16 to deactivate your Account.
10.3 We may at our sole discretion update (either automatically or otherwise), modify, suspend or discontinue the Reverse Rett Services at any time. We may automatically update the App and/or Reverse Rett Services to improve performance, enhance functionality, reflect changes to the operating system or address security issues.
10.4 [Where updates are not automatically installed, and you choose not to install them or if you opted out of automatic updates you may not be able use all or parts of the App and/or the Reverse Rett Services.]

11.1 Under Data Protection Legislation, we are required to provide you and the Patient with certain information about who we are, how we process the User Personal Data (and for what purposes) and your and the Patient’s rights in relation to the User Personal Data and how to exercise them. This information is provided in our Privacy Policy [EMBED LINK] and it is important that you read that information.
11.2 In order to enable us to comply with Data Protection Legislation and protect the User Personal Data in relation to your use of the App, you confirm to us and agree that you:
11.2.1 (where the Patient is deemed to have capacity to understand and retain information that is provided to them) have explained the functionality of the App to the Patient, including the fact that their personal data will be used in the App, and have obtained their consent if the Patient is aged 13 years of age or above;
11.2.2 are a person with parental responsibility for the Patient;
11.2.3 as a person with parental responsibility for the Patient, have provided consent on behalf of the Patient where the Patient is aged under 13 years of age or where the Patient is not deemed to have capacity to understand and retain information provided to them; and
11.2.4 will not use the App for any person for whom you do not have parental responsibility.
12.1 You acknowledge and accept that:
12.1.1 the Reverse Rett Services are:
(a) provided on an “AS IS” and “AS AVAILABLE” basis only:
(b) have not been developed to meet your individual requirements and you should check that the Reverse Rett Services meet your requirements;
(c) may not be error, fault, virus or bug free or free from malicious code or compatible with any third-party software or equipment; and
(d) may be subject to limitations, user parameters, delays and other problems inherent in the use of the App and/or the Reverse Rett Services.
12.2 You agree that you are responsible for:
12.2.1 your use of the App, your Account and/or the Reverse Rett Services;
12.2.2 your content, User Data and any other information you upload through the App, the Reverse Rett Services and/or your Account; and
12.2.3 ensuring that any Clinical Trial the Patient is matched to via the Trial Matching Service is suitable and appropriate for the Patient.
12.3 We may have to suspend your use of the App, your Account, and/or the Reverse Rett Services to:
12.3.1 deal with technical problems, make technical changes or for maintenance;
12.3.2 update the App, your Account and/or the Reverse Rett Services to reflect changes in relevant laws and regulatory requirements.
12.4 Subject to the express terms set out in these Terms, all warranties, representations, conditions and all other terms of any kind whatsoever implied by statute or common law are, to the fullest extent permitted by English law, excluded from these Terms. This Condition 9.4 shall not apply in respect of your rights under the Consumer Rights Act 2015.
13.1 All Intellectual Property Rights in the App, your Account and the Reverse Rett Services throughout the world belong to us (or our licensors) and you are granted a limited right to use the same solely for the purpose of using your App, your Account and the Reverse Rett Services in accordance with these Terms. These rights are licensed and not sold to you. You have no Intellectual Property Rights in, or to, the App, your Account and the Reverse Rett Services.

14.1 These Terms set out the full extent of our obligations and liabilities in respect of the supply of the App, your Account and the Reverse Rett Services and your use of the same.
14.2 We are responsible to you for foreseeable loss and damage caused by us. If we fail to comply with these Terms, we are responsible for loss or damage you suffer that is a foreseeable result of our breaching these Terms or our failing to use reasonable care and skill, but we are not responsible for any loss or damage that is not foreseeable. Loss or damage is foreseeable if either it is obvious that it will happen or if, at the time you accepted these terms, both we and you knew it might happen.
14.3 We do not exclude or limit in any way our liability to you where it would be unlawful to do so. This includes liability for death or personal injury caused by our negligence or the negligence of our employees, agents or subcontractors or for fraud or fraudulent misrepresentation.
14.4 If defective digital content that we have supplied damages a device or digital content belonging to you, we will either repair the damage or pay you compensation. However, we will not be liable for damage that you could have avoided by following our advice to apply an update or for damage that was caused by you failing to correctly follow account operation instructions or to have in place the minimum system requirements advised by us (if any), or appropriate and up-to-date anti-virus software.
14.5 We shall not be liable for the success, efficacy, or suitability of any Clinical Trial that the Patient takes part in. All Clinical Trials that the Patient may be identified as suitable to take part in are provided by third parties and therefore Reverse Rett has no control or responsibility over the quality or suitability of such Clinical Trials. The User remains responsible at all times for seeking independent advice and satisfying itself that any Clinical Trial the Patient takes part in is suitable for the requirements and needs of the Patient.
14.6 We are not liable for business losses. The App, your Account and the Reverse Rett Services are for domestic and private use by you. If you use the App, your Account and the Reverse Rett Services for any commercial, business or resale purpose we will have no liability to you for any loss of profit, loss of business, business interruption, or loss of business opportunity.
14.7 If your use of the App, your Account and the Reverse Rett Services is delayed by an event outside our control then we will use reasonable endeavours to contact you as soon as possible to let you know and we will take steps to minimise the effect of the delay. Provided we do this we will not be liable for delays caused by the event.
15.1 We may (at our discretion) deactivate or suspend (for such time as we may consider appropriate) your access to your Account and/or access to all/or part of the Reverse Rett Services at any time if you are in breach of these Terms and if such breach can be remedied, fails to remedy the same when given a reasonable opportunity to do so.
15.2 We may also suspend your Account and/or your access to the Reverse Rett Services:
15.2.1 to deal with technical problems, make technical changes or for maintenance;
15.2.2 to update the App and/or the Reverse Rett Services to reflect changes in relevant laws and regulatory requirements.
16.1 You can close your Account by adjusting the relevant settings within your Account.
16.2 On the deactivation of your Account, all licences and rights granted to you under these Terms shall immediately cease and automatically terminate and you will no longer be able to use the Reverse Rett Services.
16.3 Deactivation and closure of your Account shall not affect any rights, remedies, obligations or liabilities of the Parties that have accrued up to the date your Account was closed, including the right to claim damages in respect of any breach of these Terms which existed at or before the date of termination and any provision of these Terms that expressly or by implication is intended to come into or continue in force on or after closure of your Account shall remain in full force and effect.
17.1 Events outside our control. We shall not be deemed to be in breach of these Terms or otherwise liable to you in any manner whatsoever for any failure or delay in performing our obligations under these Terms due to any event or circumstance beyond our reasonable control, or which by its nature could not have been foreseen, or, if it could have been foreseen, was unavoidable.
17.2 Assignment. We may transfer our rights and obligations under these Terms to another organisation. We will always tell you in writing if this happens and we will ensure that the transfer will not affect your rights under these Terms. You may only transfer your rights or your obligations under these terms to another person if we agree in writing.
17.3 Entire Agreement. These Terms and any documents expressly referred to in them contains the entire agreement between you and us and supersedes and extinguishes any previous agreement, understanding, assurances, promises, warranties and representations between us (whether written or oral) relating to the subject matter of these Terms. You agree that you shall have no remedies in respect of any statement, representation, assurance, promise or warranty (whether made innocently or negligently) that is not set out in these Terms.
17.4 Third Party rights. These Terms do not give rise to any rights under the Contracts (Rights of Third Parties) Act 1999 to enforce any of its provisions.
17.5 Waiver Even if we delay in enforcing these Terms, we can still enforce it later. If we do not insist immediately that you do anything you are required to do under these Terms, or if we delay in taking steps against you in respect of your breach of these Terms, that will not mean that you do not have to do those things and it will not prevent us taking steps against you at a later date.
17.6 Severance. Each of the Conditions and sub-Conditions of these Terms operate separately. If any court or relevant authority decides that any of them are unlawful, the remaining Conditions and sub-Conditions will remain in full force and effect.
18.1 If we are providing notice to you, we shall send such notice to the email address registered to your Account. If you are providing notice to us, in connection with these Terms it shall be sent to us via your Account or by email to [EMAIL ADDRESS FOR NOTICE].
18.2 Any notice shall be deemed to have been received the next working day.
18.3 This Condition 18 does not apply to the service of any proceedings or other documents in any legal action or, where applicable, any arbitration or other method of dispute resolution.
19.1 These Terms and any dispute or claim arising out of or in connection with them or their subject matter or formation (including non-contractual disputes or claims) shall be governed by and interpreted in accordance with the English law.
19.2 You can bring proceedings in the English Courts or the:
19.2.1 Scottish Courts if you live in Scotland; or
19.2.2 Northern Irish Courts if you live in Northern Ireland.