Privacy Notice

Privacy Notice

What is this Privacy Notice for?

This privacy notice is for this website and served by the Pulmonary Vascular Research Institute (PVRI) and governs the privacy of its users who choose to use it. The notice sets out the different areas where user privacy is concerned and outlines the obligations and requirements of users, the website and PVRI. The way this website processes, stores and protects user data and information is also detailed in this notice.

The Website

PVRI takes a proactive approach to user privacy and ensure the necessary steps are taken to protect the privacy of its users throughout their visiting experience. This website complies to all UK national laws and requirements and all handling of your personal data is done in compliance with the General Data Protection Regulation (EU) 2016/679.

What are your rights?

When reading this notice, it might be helpful to understand that your rights arising under Data Protection Legislation include:

  • The right to be informed of how your Personal Data is used (through this notice);
  • The right to access any personal data held about you;
  • The right to withdraw consent at any time, by contacting or following the method outlined in the Use of Cookies section;
  • The right to rectify any inaccurate or incomplete personal data held about you;
  • The right to erasure where it cannot be justified that the information held satisfies any of the criteria outlined in this policy, or where you have withdrawn consent;
  • The right to prevent processing for direct marketing purposes, scientific/historical research or in any such way that is likely to cause substantial damage to you or another, including through profile building; and
  • The right to object to processing that results in decisions being made about you by automated processes and prevent those decisions being enacted. 


Who is the Data Controller?

Where we have collected your personal data directly from you, we, the PVRI is the Data Controller. The PVRI is a charity registered in England and Wales (No: 1127115) and a Company Limited by Guarantee (No. 5780068) with the registered address of 5 Tanner Street, London, SE1 3LE United Kingdom. Tel + 44(0)1227 787 972,Our Data Protection Lead is the PVRI Chief Executive. If you have any further questions about your data, please email

Why are we processing your data?

Use of Cookies

This website uses cookies to better the users experience while visiting the website. Where applicable this website uses a cookie control system allowing the user on their first visit to the website to allow or disallow the use of cookies on their device. This complies with legislation requirements for websites to obtain explicit consent from users before leaving behind or reading files such as cookies on a user's device. Cookies are small files saved to the user's device that track, save and store information about the user's interactions and usage of the website. This allows the website, through its server to provide the users with a tailored experience within this website. Users are advised that if they wish to deny the use and saving of cookies from this website on to their device, they should take necessary steps within their web browsers security settings to block all cookies from this website and its external serving vendors. This website uses tracking software to monitor its visitors to better understand how they use it. This software is provided by Google Analytics which uses cookies to track visitor usage. Use of Google Analytics is conducted in accordance with Google's privacy policy: Other cookies may be stored to your device by external vendors when this website uses referral programs, sponsored links or adverts. Such cookies are used for conversion and referral tracking and typically expire after 30 days, though some may take longer. No personal information, other than your pseudonymised identifier, is stored, saved or collected. You can exercise any of your rights (outlined above) in relation to our use of cookies. This processing is conducted lawfully on the basis of article 6, section 1, sub-section f – ‘our legitimate interests’.

Contact & Communication

Users contacting this website do so at their own discretion and provide any such personal details in acknowledgement of the risks inherent in transferring data over the internet. This website and the PVRI use any information submitted to provide you with further information about our work and the products/services we offer, or to assist you in answering any questions or queries you may have submitted. Your details are processed by the Third Parties noted below only for the purposes outlined. Every effort has been made to ensure a safe and secure form for email submission, but we advise users that no form of internet communication is 100% secure, and that you use this feature at your own risk. The data we collect for contacting you through our website will include your name, email address and any other personal data included within the content of your message. This processing is conducted lawfully on the basis of article 6, section 1, sub-section f – ‘our legitimate interests’. 

Email News

This website operates an email newsletter program, used to inform subscribers about products and services supplied by this website. Users can subscribe through an online automated process should they wish to do so but do so at their own discretion. Some subscriptions may be manually processed through prior written agreement with the user. Subscriptions are also taken in compliance with the Privacy and Electronic Communications Regulations 2003. All personal details relating to subscriptions are held securely and in accordance with the General Data Protection Regulation. No personal details are passed on to third parties nor shared with companies/people outside of the company that operates this website. Email marketing campaigns published by this website or PVRI contain tracking facilities within the actual email using Microsoft Dynamics unique URLs integrated with the bespoke PVRI CRM to analyse the effectiveness of email content. This data is stored on encrypted servers, accessible only to the PVRI and, upon explicit consent, to our CRM providers Infinity Group The Coach House, Spencer Mews , Tunbridge Wells, Kent, TN1 2PY , when needed for troubleshooting.  Subscriber activity is tracked and stored in a database for future analysis and evaluation. Such tracked activity may include; the opening of emails, forwarding of emails, the clicking of links within the email content, times, dates and frequency of activity. This information is used to refine future email campaigns and supply the user with more relevant content based around their activity. In compliance with the Privacy and Electronic Communications Regulations 2003 subscribers are given the opportunity to un-subscribe at any time through an automated system. This process is detailed at the footer of each email campaign. If an automated un-subscription system is unavailable clear instructions on how to un-subscribe will by detailed instead. This processing is conducted lawfully on the basis of article 6, section 1, sub-section a – ‘your consent’. 


When joining the PVRI as a member, you will be asked to provide:

a)     Your name;

b)     Email address;

c)     Institution details

d)     Job title (details of professional capacity).

Your details are not passed on to any third parties outside our membership network, however we do share details with other members through the Members Directory. Sharing data is automated upon ticking the appropriate box to share data through the PVRI open directory.

This processing is conducted lawfully on the basis of article 6, section 1, sub-section a – ‘your consent’.

What are the PVRI’s ‘legitimate interests’?

The PVRI’s legitimate interests are its business needs balanced against the rights and freedoms of all individuals affected by that need. These are agreed by  the PVRI’s  Board of trustees and incorporates considerations of the risks present in our processing, your likely response to those risks (unless you inform us of your actual considerations) and what benefits you are likely to receive from our processing.

Our use of cookies is based on our legitimate interest in analysing how our website is used, both for security and business reasons, and using that information to make our service more secure and better for you to use. Your objection to use using cookie data in this way (as outlined in the section above) will nullify our legitimate interest in processing your personal data only.

Our processing of your personal data in response to communications initiated by you is based on our legitimate interest in responding to enquires or suggestions about our organisation and the corresponding benefit you will receive in our response. 

Payment processing

If you use your credit or debit card to donate to us, buy something or pay for a registration online we will use a specialist payment processor. We will also ensure that card details are handled securely under Payment Card Industry (PCI) Data Security Standards. For more information about these Standards see here -

If you provide your card details to make a donation by phone, only PVRI staff who are authorised and trained to process payments should be able to collect or see your card details. We never store your credit or debit card details following the completion of your transaction. All card details and validation codes are securely destroyed once the payment or donation has been processed.

Please do not send an email containing any credit or debit card details, since it will be immediately deleted and no payment will be taken.


 Who else will receive your personal data?

 All members have access to the names and contact details of other members for the purpose of co-operation and communication across our network. When joining the PVRI network, your membership information will, with your consent (see above), be visible to all other members and you will be able to see others membership information, including personal data, through the Members Directory.

The following organisations also process your personal data on our behalf. This relationship is governed by a contractual relationship that operates in accordance with the GDPR. 


Third Party Organisation 

Purposes for Carrying Out Processing


Infinity group

Spencer Mews, The Coach House, Camden Rd, Tunbridge Wells TN1 2PY


Database hosting on encrypted servers. Access to data is given on a per request basis for troubleshooting technical errors with performance of database.





York House, Cantarus, York St, Manchester M2 3BB



Staging website hosting on encrypted servers. Access to data is given on a per request basis for troubleshooting technical errors with the PVRI live & staging website.




Warren IT Services


Unit 12, The Glenmore Centre Shearway Business Park, Pent Rd, Folkestone CT19 4RJ



General IT support with access to PVRI in-house servers. Access to servers is given on a per request basis for troubleshooting technical errors with performance of the servers.






Corporate Headquarters 14455 N. Hayden Rd., Ste. 226
Scottsdale, AZ 85260 USA



Live website hosting on encrypted servers. Access to data is given on a per request basis for troubleshooting technical errors with the PVRI live website.




Microsoft Dynamics CRM


1065 La Avenida Mountain View, CA, USA 94043



Provide tracking facilities analyse the effectiveness of email content.




Google Analytics


1600 Amphitheatre Parkway Mountain View, CA 94043 United States



Tracking visitor usage to monitor the effectiveness of the website and our overall impact worldwide.






Does your data leave the EU?

Yes. The PVRI is a worldwide network and members’ data are shared across the network. Of the organisations noted above as operating outside of the EU, the following applies: 

Third Party Organisation 

Country of Operation

Contractual Safeguards Existing



Corporate Headquarters 14455 N. Hayden Rd., Ste. 226
Scottsdale, AZ 85260 USA



United States of America

Microsoft Dynamics CRM


1065 La Avenida Mountain View, CA, USA 94043



United States of America

Google Analytics


1600 Amphitheatre Parkway Mountain View, CA 94043 United States



United States of America


A full list of PVRI suppliers is available upon request. 

How long will your personal data be kept?

The PVRI holds different categories of personal data for different periods of time. Wherever possible, we will endeavour to minimise the amount of personal data that we hold, as detailed below, or, where suppression of email newsletter has been requested, to include only your email address.

Where ‘consent’ is the basis for our lawful processing of your data, we will retain your data so long as both the purpose for which it was collected and your consent are still valid. We will review the status of your consent should the purpose for which the data was collected change and treat non-response to any requests for renewal of consent made by us as if they were your request to withdraw consent. Occasionally, we might identify a legitimate interest in retaining some of your personal data that has been obtained by consent. If we do, we will inform you that we intend to retain it under these conditions and identify the interest specifically.

Where we process your data on the basis of ‘legitimate interest’, we will retain your data for so long as the purpose for which it is processed remains active. We review the status of our legitimate interests every thirty (30) days and will update this notice whenever we determine that either a legitimate interest no longer exists or that a new one has been found.  

Who can you complain to? 

In addition to sending us your complaints directly at you can send complaints to our supervisory authority. As the PVRI predominantly handles the personal data of UK nationals and is based within the UK, our supervisory authority is the Information Commissioner’s Office. If you believe that we have failed in our compliance with data protection legislation, complaints to this authority can be made by visiting 

What profiling does the PVRI perform?

The PVRI performs basic profiling of visitors to this website or its members to better serve more relevant content. Profiling characteristics include country, membership type and specialism or interest area.

External Links

Although this website only looks to include quality, safe and relevant external links, users are advised adopt a policy of caution before clicking any external web links mentioned throughout this website. (External links are clickable text / banner/image links to other websites, similar to; or Bed & Breakfast Pembrokeshire.) The cannot guarantee or verify the contents of any externally linked website despite their best efforts. Users should therefore note they click on external links at their own risk and this website and PVRI cannot be held liable for any damages or implications caused by visiting any external links mentioned.

Adverts and Sponsored Links

This website may contain sponsored links and adverts. These will typically be served through our advertising partners, whom may have detailed privacy policies relating directly to the adverts they serve. Clicking on any such adverts will send you to the advertiser’s website through a referral program which may use cookies and will track the number of referrals sent from this website. This may include the use of cookies which may in turn be saved on your device. Users should therefore note that they click on sponsored external links at their own risk and this website and PVRI cannot be held liable for any damages or implications caused by visiting any external links mentioned.

Social Media Platforms

Communication, engagement and actions taken through external social media platforms that this website and PVRI participate on are custom to the terms and conditions as well as the privacy policies held with each social media platform respectively. Users are advised to use social media platforms wisely and communicate/engage upon them with due care and caution in regard to their own privacy and personal details. Neither this website nor PVRI will ever ask for personal or sensitive information through social media platforms and encourage users wishing to discuss sensitive details to contact them through primary communication channels such as by telephone or email. This website may use social sharing buttons which help share web content directly from web pages to the social media platform in question. Users are advised before using such social sharing buttons that they do so at their own discretion and note that the social media platform may track and save your request to share a web page respectively through your social media platform account. The PVRI does not collect any personal data from social media profiles used in tandem with this website.  

Contacting us via social media

If you send us a private or direct message via social media, we may share this information with PVRI staff (for example, in order to respond to a specific query or to pass on information). We will not share messages with any other organisations without your prior consent.

Shortened Links in Social Media

This website and PVRI, through their social media platform accounts, may share web links to relevant web pages. By default some social media platforms shorten lengthy urls [web addresses] (this is an example: Users are advised to take caution and good judgement before clicking any shortened urls published on social media platforms by this website and PVRI. Despite the best efforts to ensure only genuine urls are published many social media platforms are prone to spam and hacking and therefore this website and PVRI cannot be held liable for any damages or implications caused by visiting any shortened links.

2022 Edited & customised by:

The Pulmonary Vascular Research Institute is a registered charity in the United Kingdom (Charity No: 1127115). A private limited company. Registered company in the United Kingdom (5780068). Registered address in the UK: 5 Tanner Street, London, SE1 3LE, United Kingdom + 44(0)1227 787 972.

Last updated October 2023

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