Privacy Policy

The UK Respiratory Gene Therapy Consortium (UKRGTC) respects your privacy and is committed to protecting your personal data.  This privacy notice will:

 

  • inform you as to how we look after your personal data when you visit our website;

  • tell you about your privacy rights;

  • tell you how the law protects you.

 

What do we collect?

UKRGTC does not collect, sell, rent, or otherwise distribute email addresses or any other personal information.  We also do not solicit or collect any emails unless you make a request or enquiry directly to us about our work.

 

We may collect data about you, how you use our website, and how our websites perform when you use them.  This may include personal data.

 

Personal data, or personal information, means any information about an individual from which that person can be identified.  It does not include data where the identity has been removed (anonymous data).

 

We may collect, use, store and transfer different kinds of personal data about you which we have grouped together as follows:

 

  • Identity data - includes first name, maiden name, last name, username or similar identifier, marital status, title, date of birth, gender and your Internet Protocol (IP) address

  • Contact data -includes billing address, postal address, email address and telephone numbers

  • Technical data - includes your Internet Protocol (IP) address, your login data, browser type and version, time zone setting and location, browser plug-in types and versions, operating system and platform and other technology on the devices you use to access this website

  • Profile data - includes your username and password, purchases or orders made by you, your interests, preferences, feedback and survey responses

  • Usage data - information on how you use the site, using cookies and page tagging techniques

  • Email data - your email address and subscription preferences when you sign up to any email alerts, newsletters and other UKRGTC mailing lists

  • Email usage - how you use our emails.  For example, whether you open them and which links you click on

 

This data can be viewed by authorised people at UKRGTC, and trusted partners to:

 

  • improve the site by monitoring how you use it e.g. pages you visit on the site and browser versions used

  • gather feedback to improve our services

  • help us respond to your feedback, if you’ve asked us to

  • allow you to access the UKRGTC website with an efficient and appropriate experience

 

We make every effort to collect data appropriately and restrict monitoring only to parts of our website.

 

How we use your personal data

We will only use your personal data when the law allows us to.  Most commonly, we will use your personal data in the following circumstances:

 

  • Where we need to perform the contract we are about to enter into or have entered into with you

  • Where it is necessary for our legitimate interests (or those of a third party) and your interests and fundamental rights do not override those interests

  • Where we need to comply with a legal or regulatory obligation

  • To understand the behaviour of visitors to the site.  This would include:

    • The number of visitors to different areas

    • The types of information being searched for via the sites search engine

    • To identify any anomalies in site usage

    • To evaluate the popularity of news articles

 

Where we store your data

The UKRGTC website is hosted on the Wix.com platform.  Wix.com provides us with the online platform that allows us to inform you of our progress with our research and clinical trials.  Your data may be stored through Wix.com’s data storage, databases and the general Wix.com applications.  They store your data on secure servers behind a firewall.

 

How we keep your data secure

We have put in place appropriate security measures to prevent your personal data from being accidentally lost, used or accessed in an unauthorised way, altered or disclosed.  In addition, we limit access to your personal data to those employees, agents, contractors and other third parties who have a business need to know.  They will only process your personal data on our instructions and they are subject to a duty of confidentiality.

 

We have put in place procedures to deal with any suspected personal data breach and will notify you and any applicable regulator of a breach where we are legally required to do so.

 

How long will you use my personal data for?

We will only retain your personal data for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.

 

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

 

Disclosing your information

We may pass on your personal information if we have a legal obligation to do so, or if we have to enforce or apply our terms of use and other agreements.

 

We do not pass on your details to other websites for their own marketing or commercial purposes.

 

Cookies

Use of Cookies

 

What are cookies?

The Information Commissioner’s Office (ICO) defines a cookie as “a small file of letters and numbers that is downloaded on to your computer when you visit a website.  Cookies are used by many websites and can do a number of things e.g. remembering your preferences, recording what you have put in your shopping basket, and counting the number of people looking at a website.”

 

Current cookie legislation

On 26 May 2012, new European law relating to use of web cookies came into force in the UK that will affect most web sites.  The rules on cookies are covered by The Privacy and Electronic Communications (EC Directive) Regulations 2003 and The Privacy and Electronic Communications (EC Directive) (Amendment) Regulations 2011 and ICO is responsible for enforcing these new rules.

 

The regulations also cover similar technologies for storing information, e.g. Flash cookies.  The ICO and International Chamber of Commerce both provided guidance and advice on EU cookie directive and its implementation.  Please refer to their detailed guides for more information:

 

Information Commissioner Office - advice for members of the public [pdf]

 

For more information about the use of cookies and how to manage them, please visit All About Cookies.

 

Types of cookies

1. Strictly necessary cookies

These will generally be used to store a unique identifier to manage and identify the user as unique to other users currently viewing the website, in order to provide a consistent and accurate service to the user.

 

2. Functionality cookies

Will typically be the result of a user action, but might also be implemented in the delivery of a service not explicitly requested but offered to the user.  They can also be used to prevent the user being offered a service again that had previously been offered to that user and rejected.

 

3. Performance cookies

These are limited to performance and website improvement.

 

4. Targeting/advertising cookies

These contain a unique key that is able to distinguish individual users’ browsing habits or store a code that can be translated into a set of browsing habits or preferences using information stored elsewhere.

 

Cookies set by UKRGTC

Most cookies set by UKRGTC are temporary, or session, cookies and they are removed from your browser when your session ends.  You do not need to take any action to remove them.  Some of these cookies are essential in providing the services you are requesting from us during the session so when they are disabled parts of the web site may stop working.  We therefore encourage you to accept the cookies we serve.  However, if you wish to restrict or block the cookies which are set by our or any other website, you can do this through your Browser settings.

Strictly Necessary

 

Functionality

Cookies set by 3rd parties
We use 3rd party services like Google Analytics who set cookies to collect information about website users and usage patterns – this information is helpful to plan and maintain the service.  Most of these cookies are not essential for providing the services your request from us and can be blocked.

Opting out
Cookies

You can set your browser to refuse all or some browser cookies, or to alert you when websites set or access cookies.  If you disable or refuse cookies, please note that some parts of our website may become inaccessible or not function properly.

The following links explain how to access cookie settings in various browsers:
Google Chrome
Firefox
Internet Explorer
Apple Safari (OS X)
Apple Safari (iOS)
Android

Links to other websites
The UKRGTC website contains links to other websites.

This privacy policy only applies to www.cfgenetherapy.org.uk (including any sub-domain) and doesn’t cover other websites that we link to.  These services have their own terms and conditions and privacy policies.  If you do go to another website from this one, read the privacy policy on that website to find out what it does with your information.

Following a link to UKRGTC from another website
If you come to the UKRGTC website from another website, we may receive information from the other website.  You should read the privacy policy of the website you came from to find out more about this.

Sharing information via social network sites

The UKRGTC website may have links embedded into pages to popular social networks like twitter.com, bbc.co.uk, flickr.com, facebook.com, delicious.com, stumbleupon.com, digg.com, youtube.com etc.  Cookies generated by those sites are outside of UKRGTC’s control and may change without notice.  When you share a page or link those sites may set cookies on your device or browser and can also make information about you publicly available or stored elsewhere.  If you would like more information about privacy and the cookies used by these services, as well as information on how to opt-out, please visit their websites.

Policy Updates
We reserve the right to modify this privacy policy at any time, so please review it frequently.  Changes and clarifications will take effect immediately upon their posting on the website and you will be able to see if changes have been made by the date it was last updated at the end of this document.

Contact us
For queries regarding privacy, use of cookies or other information please contact us at ukcfgtc@gmail.com or write to the address below:

Privacy
Department of Gene Therapy
National Heart & Lung Institute
Imperial College London
Emmanuel Kaye Building
Manresa Road
London, SW3 6LR

Last updated: 6th February 2020

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