Privacy Policy

At PTEN Research, we are committed to protecting and respecting your privacy. This privacy statement explains when and why we collect personal information about people who visit our website, outlines how we use it and justifies the conditions under which we may disclose it to others and how we keep it secure.

You should note that if you are directed from our website to sites related to or collaborating with PTEN Research, you should refer to their own privacy statements upon accessing.

By visiting the PTEN Research website you are accepting the practices outlined in this policy.

Who are we?

We are PTEN Research, an independent, UK-registered charity launched in early 2017 to develop targeted therapies for PTEN Hamartoma Tumour Syndrome (PHTS). By accelerating research and building networks and partnerships, we aim to stimulate the development of therapies for PHTS patients. We fund academic and clinical research projects, as well as provide support for building networks between clinicians, researchers, corporate partners and patients.

Any questions or concerns regarding our Privacy Policy should be directed at or in writing to PTEN Research, 4th Floor, St James House, St James Square, Cheltenham, GL50 3PR.  

When and what information do we collect about you?

We collect information about you when you access our website to contact us, make a donation or sign up to receive our newsletter. The personal information we collect might include name, address, email address, IP address, and information on accessed pages and when. 

Website usage

When browsing our website, you don’t have to tell us who you are or give any personal details about yourself. The only information we gather from you when at our page is collected in standard server logs, and includes IP address, browser type, domain name, operating systems, and information such as the website that referred you to us, the files you downloaded, the pages you visit and the dates/times of those visits.

PTEN Research website uses cookies, like most other websites. They are snapshots of information sent by an organisation and stored on your hard drive to allow that website to recognise you when you visit. The data collected through cookies is strictly statistical in nature and tells us about browsing actions and patterns but does not identify you or provide any sensitive personal information. You can choose to turn off the use of cookies in your browser preferences. 

Personal identifiable information

There are a few instances in which personal identifiable information is collected about you, provided that you have explicitly agreed. 

We collect personal information about you when you sign up to receive our newsletters, provide feedback, apply for a job or request information. In these situations, we will ask you to provide personal information such as name, telephone number, postal address and e-mail address. You can choose how much or how little information you provide. This information is collected only with your knowledge and permission and is kept safe and secure in third party databases, which can be made available to PTEN Research.

If you sign up to receive our newsletter, your details are stored by the company Campaign Monitor. They may give us access to information that can lead to an improvement of our services and contact with you, such as statistics, email addresses and similar. You can read more about Campaign Monitor and how they process data here:

If you make an online donation to us, your card information is not stored by us, but rather collected by our third-party donations organisation, KindLink. They are committed to secure online processing of card transactions. We will be given access to personal information such as full name, address, email address and any other details provided by the donor, but restricted from accessing more sensitive information such as account or card details. You can read more about KindLink and how they process data here:

If you make a postal donation to us by filling out our postal donation form, we will process your payment details internally. The form includes a space for card details. We will keep these details safe and secure until your donation has been processed, after which time we will destroy the form. 

How do we use your information?

Information gathered on your general browsing of our domain may be used for the purpose of analysing trends and usage and improve the general utility of the site as well as your experience as a user of our domain.

If you have signed up to be a recipient of the newsletter we only use your information to circulate our news updates, and no further action is taken with the information you have provided.

If you have made a donation to us, your name, address and donation amount will be stored for administrative, transparency and accounting purposes. In cases where PTEN Research has access to further sensitive information such as account or card details (e.g. via a postal donation form), these will be destroyed after an appropriate amount of time.

How do we protect your information?

When you provide personal information to PTEN Research, we implement a variety of security measures to maintain the safety and integrity of your details, and protect your information from loss, misuse, unauthorised access or disclosure, alteration, or destruction.

The details about you kept on file by us or one of our third-party contracts, are protected with restricted and limited access, as well as a rigorous authorisation process upon accessing.

We do not sell or share any personally identifiable information provided on PTEN Research website to any third party without prior consent. We might, however, share relevant statistics and information with our boards, to ensure that we accurately respond to your needs and fulfil our mission.

Any information provided to us by users of our website and the services it provides is held with the utmost care and security and will not be used in ways other than as set forth in this privacy policy, or in ways to which you have explicitly consented.

From time to time we may pass your information to further third-party service providers, subcontractors and other associated organisations for the purposes of completing tasks and providing services to you on our behalf (for example to process donations as mentioned above). When we do use third party service provider we take care to only disclose the personal information necessary to our contract with them, making sure that your information is secure and not used for their own direct marketing purposes.

Opting out and changing your information

The accuracy of your information and your consent for us to keep it, is important to us. We are working on ways to make it easier for you to review and correct the information we hold about you. In the meantime, if you are currently signed up to our newsletter and change your email address, or any of the other information we hold is inaccurate or out of date, please email us at, or write to us at: PTEN Research, 4th Floor, St James House, St James Square, Cheltenham, GL50 3PR. 

If you are already a newsletter recipient and do not wish to receive updates on the work that we do to find a therapy for PHTS, you can opt- out by emailing

Transferring your information outside the European Economic Area

PTEN Research will only transfer personal data to entities outside the European Economic Area when the importing entity has provided sufficient assurances that the personal data will be adequately protected. This will be accomplished by using one of the EU Commission’s standard data transfer agreements, or other agreements ensuring the privacy of the data in question. If you require further information on this, please contact