This CMT&Me application (or “app“) is provided free of charge to users by Pharnext SA (“Pharnext“) and Vitaccess Limited (“Vitaccess“) on behalf of and for the purposes of an observational study (the “study“) sponsored by Pharnext SA, a company incorporated in France with company number 498 098 425  (“Pharnext“) to patients with type 1A (“CMT-1A“) Charcot-Marie-Tooth disease (“CMT“). Together, Pharnext and Vitaccess are referred to in these terms as “we” or “us“.

Users (referred to as “you“) are intended to be participants in the study who have been diagnosed with CMT. The app collects information from you, and also includes some condition management features (“CMFs“) for you to use.

There are some rules for you to follow in using the app and its content, and some limitations on the extent to which you should rely on the app, all as set out below. We therefore request that you agree to the following terms, which are for the benefit of both Pharnext and Vitaccess.

For information about how we use your personal data, please see the app privacy notice.

Pharnext has funded the development and management of the App for the purposes of the study and hopes to publish aggregated data from this study and present it at scientific meetings. Because of the sensitivity of the personal data collected via the App, Pharnext does not itself receive that personal data and has requested Vitaccess to determine and implement measures to comply with that purpose. In particular, personal data collected by the App is anonymised and aggregated by Vitaccess to inform the statistical analysis performed by Pharnext as part of the study. In addition, the Scientific Advisory Board has been established as an independent body to protect participants’ interests and provide advice on research related requests to access the data provided by the study database.

These terms may be updated from time to time. They were last updated on 30 September 2020.

  1. Who we are

Vitaccess Limited is a company registered in England and Wales with company number 10642948.

Intellectual property rights (including copyright, database rights and trade marks) subsisting in relation to the app and its content are owned by Vitaccess Limited and its licensors.

Pharnext SA is a company incorporated in France with company number 498 098 425 and address at  46 rue Saint-Lazare, 75009 Paris, France.

Please contact us with any queries about these terms, or if you have any concerns about the actions of other users with whom you interact. You can contact us at: .

  1. Acceptable use of the app

You agree that you shall:

(a) access and use the app only for the purposes of participating in the study and using the CMFs, and you acknowledge the intention is for you regularly to participate in surveys;

(b) access and use the app using your own username and password, and keep your password confidential;

(c) provide us with accurate information to the best of your knowledge;

(d) ensure that any information and other content which you input or upload into the app (or otherwise provide to us) does not include any unlawful content, including:

content which is obscene, abusive or defamatory; or

content which, when stored or used by us for the purposes of the study infringes or breaches intellectual property rights (such as copyright), data protection or confidentiality obligations or any rights of privacy;

(e) respect other users of the app and their rights, and not harass, threaten or intrude upon their privacy, nor interfere with their lawful use of the app. In particular, where a CMF allows you to see or access information about or contact other people, respect the confidentiality and sensitivity of such information, and the privacy of such other people;

(f) not access, use, copy, modify or share the app or its content other than as permitted by us for the purposes of the study and the CMFs, nor attempt to reverse engineer, decompile or disassemble any of the app’s software or technology;

(g) not make any unlawful or unauthorised use of the app or our (or our providers’) equipment, software or networks, including:

  • attempting to gain unauthorised access;
  • introducing any virus or malware;
  • causing any denial of service attack, overloading or causing damage; or
  • committing any criminal, fraudulent or otherwise unlawful act;

(h) uninstall the app if you withdraw from the study, or if we cease to provide it for the purposes of the study or, if requested by us, install and use an upgraded version of the app in place of your current version;

(i) inform us promptly if you become aware of any misuse of the app; and

(j) comply with such additional rules as we may reasonably request in relation to the app and the study.

  1. Limitations on the app and our liability to you

(a) We may, at any time, withdraw the app or any CMF or other content, or terminate or suspend your access to, or availability of, the app and its content (or any part of it). This may be done at our absolute discretion, including if you are not an eligible participant, if you do not regularly complete surveys, if you do not comply with these terms, for the purposes of repair, maintenance or updates, if there are changes to the study, or if you are withdrawn from the study by any other party (such as the study investigator or Salus IRB).

(b) We may also, at any time, make changes to the app or any CMF or other content.

(c) Whilst we seek to provide the app and the CMFs with reasonable care and skill, we do not guarantee its availability, accuracy or appropriateness for your specific needs. In particular, it is not intended to provide you with advice on your symptoms, and we do not routinely monitor your data to identify medical concerns. You should raise any medical concerns or issues with your clinician.

(d) We do not exclude or limit any liability to you for fraud, or for death or personal injury caused by our negligence, or any other liability which cannot lawfully be excluded.

(e) Subject to (d), to our obligations to provide the app and CMFs with reasonable care and skill, and to our data protection obligations, we are not liable to you for:

  • any loss, damage or distress arising from reliance on information or reliance on availability of the app or any CMF or other content; nor
  • any unavailability of data or information within the app (for example if you are unable to access information which you previously uploaded).

(f) We are not responsible for the content, security or use of any communications you enter into outside of the app and our systems (such as where you or other users contact each other by email), even where initial contact details have been shared by you or other users using the app.

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