This MyRealWorld® CF website is provided free of charge to users by Vertex Pharmaceuticals Incorporated ("Vertex"), a company incorporated in the United States (US) with company number VXR-US-00-00270, and Vitaccess Limited ("Vitaccess") on behalf of and for the purposes of an observational study (the "study"), sponsored by Vertex, into patients with cystic fibrosis (CF). Together, Vertex and Vitaccess are referred to in these terms as "we" or "us".
The intended users of the website (referred to as "you") are people aged 6 or over who have been diagnosed with CF, and people aged 18 or over who are caregivers for dependents with CF. As part of the study, the website collects information from you about your or your dependent’s CF.
There are some rules for you to follow when using the website and its content, and some limitations on the extent to which you should rely on the website; all are set out below. We therefore request that you agree to the following terms, which are for the benefit of both Vertex and Vitaccess.
For information about how we use your personal data, please see the website’s privacy notice.
Vertex has funded the development and management of the website 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 website, Vertex does not itself receive such data. Personal data collected by the website are anonymized and aggregated by Vitaccess to inform the statistical analysis performed by Vertex as part of the study. In addition, a Steering Committee 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 .
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 trademarks) subsisting in relation to the website and its content are owned by Vitaccess Limited and its licensors.
Vertex Pharmaceuticals Incorporated is a company incorporated in the US with company number VXR-US-00-00270 and address at 50 Northern Avenue, Boston, MA 02210.
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: firstname.lastname@example.org.
2. Acceptable use of the website
You agree that you shall:
- access and use the website only for the purposes of participating in the study, and you acknowledge that the intention is for you to contribute data to the study;
- access and use the website using your own username and password, and keep your password confidential;
- provide us with accurate information to the best of your knowledge;
- ensure that any information and other content which you input or upload into the website (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;
- respect other users of the website and their rights, and not harass, threaten or intrude upon their privacy, nor interfere with their lawful use of the website;
- not access, use, copy, modify or share the website or its content other than as permitted by us for the purposes of the study, nor attempt to reverse engineer, decompile or disassemble any of the website's software or technology;
- not make any unlawful or unauthorized use of the website or our (or our providers') equipment, software or networks, including:
- attempting to gain unauthorized 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;
- inform us promptly if you become aware of any misuse of the website; and
- comply with such additional rules as we may reasonably request in relation to the website and the study.
3. Limitations on the website and our liability to you
- We may, at any time, withdraw the website or any of its content, or terminate or suspend your access to, or availability of, the website 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 enter data as requested, if you do not comply with these terms, for the purposes of repair, maintenance or update, 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 an ethics approval board).
- We may also, at any time, make changes to the website.
- Whilst we seek to provide the website with reasonable care and skill, we do not guarantee availability, accuracy or appropriateness for your specific needs. In particular, the website 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.
- 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.
- Subject to (d), to our obligations to provide the website 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 website or any content; nor
- any unavailability of data or information within the website (for example if you are unable to access information which you previously uploaded).
- We are not responsible for the content, security or use of any communications you enter into outside of the website and our systems (such as where you or other users contact each by email), even where initial contact details have been shared by you or other users using the website.