EULA

This End User License Agreement (the Terms) governs your use of the app, your account, and the features, services, and technologies that we make available to you as part of [www.cohorts.io] (together the Cohorts.io Services). Please read these terms carefully before setting up your account.

IMPORTANT INFORMATION

1.1 By registering with us for your account and clicking to confirm you accept the Terms and/or continuing to use the Cohorts.io 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 Cohorts.io Services; 1.3.3 how changes can be made to your account, the Cohorts.io 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.

WHO WE ARE

2.1 We are Cohorts.io (Cohorts.io, we, us, or our). We are a private limited company registered with company number [insert company number]. Our registered office is located at [insert registered office address].

THERE ARE OTHER TERMS THAT MAY APPLY TO YOU

3.1 These Terms refer to the following additional terms, which will also apply to your use of the app and the Cohorts.io Services: 3.1.1 our Privacy Policy which sets out details of how we collect, use, and look after your personal data when you use the Cohorts.io Services; and 3.1.2 our Cookies Policy, which sets out information about the cookies used with the Cohorts.io Services.

DEFINITIONS AND INTERPRETATION

4.1 In these Terms, the following words and expressions shall have the following meanings:

  • Account: the personal account created within the app and used by the user to access and use the Cohorts.io Services;
  • App: the Cohorts.io web application accessible via [www.cohorts.io];
  • Clinical Trial: the clinical research and study trials provided by third-party clinical research and/or pharmaceutical providers, in respect of which the Trial Matching Service is provided;
  • Condition: a condition of these Terms;
  • Data Protection Legislation: all applicable data protection and privacy legislation in force from time to time, including [insert relevant data protection legislation];
  • Hospital Passport: the PDF version of the patient record available for download by the user;
  • Intellectual Property Rights: any and all copyrights, trademarks, patents, or other intellectual property rights;
  • Patient: the individual for whom the user has parental responsibility and to whom the Trial Matching Service is provided;
  • Rett Registry Forum: the interactive forum facility provided to users of the app to facilitate communication and discussion;
  • 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;
  • User Data: any data in any form provided by the user to us, including any data uploaded to the app by the user or on the user's behalf;
  • User Personal Data: any personal data comprised in the user data.

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:

  • a person shall include an individual, company, partnership, or other legal entity;
  • the singular shall include the plural and vice versa;
  • a statute or statutory provision is a reference to it as amended, extended, or re-enacted from time to time;
  • writing or written excludes fax;
  • include, including, and in particular or anything similar are illustrative only and do not limit the sense of the words preceding or following them.

SETTING UP YOUR ACCOUNT

5.1 These Terms will come into effect at the time you click the button confirming your acceptance 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 warrant 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.

PATIENT RECORD AND HOSPITAL PASSPORT

6.1 As part of your account, you can submit information regarding the patient's health, conditions, medication, medical history, and personal details to create a patient record. 6.2 The patient record is for your information purposes only and is not intended as a medicinal diary management or reminder function. 6.3 Third parties named within the patient record will not be contacted or provided with access to the patient record. 6.4 Except for the type of data listed in Condition 8.1, the information and data submitted to the patient record is visible to you only and will not be visible or accessible by us or any third party. 6.5 You can select and add a current condition from the Rett Disorders Alliance list to the patient record to access further information regarding such condition, its symptoms, and potential treatments. The information provided via the Rett Disorders Alliance list is for informational purposes only and is not intended to be medical advice. 6.6 You can download a full copy of the patient record in PDF format as the "Hospital Passport."

RETT REGISTRY FORUM

7.1 We provide an interactive service called the Rett Registry Forum, allowing users to connect, communicate, and share their experiences with other users. 7.2 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 us a license to use, reproduce, modify, publish, distribute, perform, and display the submission on the app. 7.4 Submissions must conform to standards of accuracy, decency, and lawfulness.

CLINICAL TRIALS

8.1 As part of the Cohorts.io Services, we will use data from the patient record to identify clinical trials that the patient may be eligible to participate in. 8.2 If we identify a potential clinical trial, we will contact you to confirm your interest. 8.3 If you express interest, we will contact you to obtain further information required for screening purposes. 8.4 The suitability and efficacy of any clinical trial are not guaranteed, and the user remains responsible for ensuring the trial is suitable for the patient.

ACCEPTABLE USE

9.1 You agree to use the Cohorts.io Services in accordance with these Terms, keep a secure password for your account, and prevent unauthorized access to the Cohorts.io Services. 9.2 We grant you a limited license to use the Cohorts.io Services for personal non-commercial use only. 9.3 You agree not to use the app or Cohorts.io Services in an unlawful manner, infringe our intellectual property rights, transmit defamatory or offensive material, or distribute the app or Cohorts.io Services without our consent.

UPDATES

10.1 We may update these Terms to reflect changes in laws or introduce additional features. We will notify you of any updates and you are responsible for reviewing and understanding them. 10.2 By continuing to use the app and/or the Cohorts.io Services following an update, you agree to comply with the updated Terms. 10.3 We may update the app and/or the Cohorts.io Services to improve performance, enhance functionality, or address security issues.

USER AND PATIENT PRIVACY

11.1 Under Data Protection Legislation, we provide information about how we process user personal data in our Privacy Policy. 11.2 You confirm and agree that you have explained the functionality of the app to the patient and obtained necessary consents.

LIMITATIONS TO THE COHORTS.IO SERVICES

12.1 The Cohorts.io Services are provided on an "AS IS" and "AS AVAILABLE" basis and may have limitations, delays, or other problems inherent in their use. 12.2 You are responsible for your use of the app and the Cohorts.io Services, your content, and ensuring the suitability of any clinical trial for the patient.

INTELLECTUAL PROPERTY RIGHTS

13.1 All intellectual property rights in the app, your account, and the Cohorts.io Services belong to us, and you are granted a limited right to use them for personal non-commercial use only.

OUR LIABILITY TO YOU

14.1 We are responsible for foreseeable loss and damage caused by us. We are not liable for loss or damage that is not foreseeable. 14.2 We do not exclude or limit liability for death or personal injury caused by our negligence or for fraud or fraudulent misrepresentation. 14.3 We are not liable for the success, efficacy, or suitability of any clinical trial. 14.4 We are not liable for business losses. 14.5 We are not liable for delays caused by events outside our control.

RESTRICTING YOUR ACCESS TO THE COHORTS.IO SERVICES

15.1 We may deactivate or suspend your access to your account and/or the Cohorts.io Services if you breach these Terms or for technical reasons or maintenance. 15.2 We may suspend your account and/or access to the Cohorts.io Services for technical reasons or to reflect changes in laws and regulatory requirements.

CLOSING YOUR ACCOUNT

16.1 You can close your account through the account settings. 16.2 On deactivation of your account, all licenses and rights granted under these Terms will terminate.

GENERAL

17.1 We shall not be deemed in breach of these Terms for any failure or delay in performing our obligations due to events beyond our control. 17.2 We may transfer our rights and obligations under these Terms to another organization. 17.3 These Terms constitute the entire agreement between you and us. 17.4 These Terms do not give rise to any rights under the Contracts (Rights of Third Parties) Act 1999. 17.5 Our delay in enforcing these Terms does not prevent us from enforcing them later. 17.6 If any provision of these Terms is unlawful, the remaining provisions will remain in force.

NOTICES

18.1 Notices will be sent to the email address registered to your account. 18.2 Notices sent by us to you will be deemed received and properly served 24 hours after an email is sent.

GOVERNING LAW AND JURISDICTION

19.1 These Terms are governed by English law. 19.2 Disputes arising out of or in connection with these Terms shall be subject to the exclusive jurisdiction of the English courts.

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