The Childhood Eye Cancer Trust is registered under the Data Protection Act 2018.

This privacy notice sets out how the Childhood Eye Cancer Trust (CHECT) uses and protects information that identifies or can be used by us to identify you. This information is known as “personal data”.

We process your personal data for a number of purposes in connection with our charitable purpose, which is to:

  • Provide support and information to families and individuals.
  • Fund research into the prevention and treatment of retinoblastoma.
  • Raise awareness among health professionals and the public.
  • Influence policy to improve services for patients.

CHECT is committed to ensuring that your privacy is protected. Should we ask you to provide certain personal information by which you can be identified, then you can be assured that it will only be used in accordance with this privacy statement.

CHECT may change this policy from time to time by updating this page. You should check this page from time to time to ensure that you are happy with any changes. This policy is effective from January 2024.

If you have a question about our processing of your personal information, you can contact us via the details set out in the Your rights section below.


  • What information does CHECT collect?
  • How does CHECT use my information?
    • Consent
    • Our contracts with you
    • Legal obligations
    • Legitimate interests
  • Direct Marketing
  • International transfers
  • Sharing your personal data
  • How long is the information kept?
  • Who can access my information?
  • Security
  • Cookies
  • Links to other websites
  • Controlling your personal information
  • Your rights
  • Updates to this policy


What information does CHECT collect?

We collect and process personal data, for example when you sign up for an event (either directly or via a third party), donate money (either directly or via a third party) or become a member. We may also obtain some personal data from other sources, and add some personal data ourselves.

The table below sets out the different types of personal data that we collect and the sources we collect it from. Please note that website information is anonymised and used solely for improving the site. We do not combine this information with any other data to build a ‘profile’.

If any of the personal data we hold about you changes, such as your contact details, please inform us without delay by contacting us (details below).


Contact information





Type of personal data

  • Name
  • Job title
  • Address
  • Telephone number
  • Email address
  • Your communication preferences

Collected from

  • You
  • The company you represent
  • Publicly available sources
  • Third parties such as JustGiving


Supporter / Member / Supplier information





Type of personal data

  • Contact information (see above)
  • Date of birth
  • Marital status
  • Gender
  • Amounts fundraised / donated
  • Financial details (including credit / debit card information)
  • UK tax payer information (for Gift Aid)
  • Communications we may have with you, whether relating to donations / services received or otherwise.
  • Communications you have via our social media groups and pages (Facebook and WhatsApp) for support network and fundraising purposes, including your communications with our administrators and other members/users of these groups and pages
  • Responses to survey or feedback requests
  • How you came to find us or about our services
  • Sensitive information (see sub-categories below)

Collected from

  • You
  • Third parties such as JustGiving
  • Third party bank / payment services provider


Sensitive information and criminal data





Type of personal data

  • Basic health information for members (including diagnosis information, treatment received and level of visual impairment)
  • Basic information relating to actual or suspected criminal convictions and offences (recruitment checks)

Collected from

  • You
  • Disclosure and Barring Service (DBS) check carried out for recruitment purposes.


Website information





Type of personal data

  • IP address and other online identifiers
  • Details of your online browsing activities on our website, including the full URL; clickstream to, through and from the site (including date and time); services you viewed or searched for; page response times, download errors; length of visits to certain pages; page interaction information (such as scrolling, clicks, and mouse-overs); methods used to browse away from the page
  • Your browser type and version, relevant plug-ins, operating system and platform
  • Your time zone settings

Collected from

  • You
  • Device used to access the website
  • Our website (including the cookies used – please see our cookies policy for more information)

How does CHECT use my information?

We process your personal data for particular purposes in connection with your membership, your donations to us or attendance at our events.

We are required by law to always have a “lawful basis” (i.e. a reason or justification) for processing your personal data.

The types of processing activities undertaken by us in relation to your personal data and the lawful basis we rely on, are set out below:


In some circumstances, we process personal data on the basis of your consent. For example, we will sometimes ask for your consent before we process personal data which relates to your health or any other special category personal data and criminal convictions and/or criminal allegations data (criminal data).

We will also obtain your consent for certain types of direct marketing (please see the Direct Marketing section below for more information).

We will keep a record of consents you provide.  Your consent can be withdrawn at any time.

Our Contracts with you

Where we have a contract in place with you (such as processing memberships), and it is necessary for us to process personal data about you in order to comply with our obligations to you under that contract, this will be our lawful basis for processing such personal data.

Legal Obligations

We process your personal data as required to comply with the law. Applicable law may require us to share your personal data, e.g.in connection with a court order. We may also use your personal data for other purposes such as fraud prevention, to comply with money laundering regulations and to protect people’s rights, property or safety.

If certain levels of financial donations are made, the Fundraising Regulator’s Code of Fundraising Practice requires all charities in the UK to perform certain checks regarding the individual who has made the donation. More details can be found at www.fundraisingregulator.org.uk

Please note that we may process your personal data without your knowledge or consent where this is required or permitted by law.

Our Legitimate Interests

We may process your personal data for reasons of legitimate interest, provided that your legitimate interests or fundamental rights do not override those interests. We will conduct a legitimate interest assessment before processing your personal data on the basis of legitimate interest. The following purposes of processing your personal data which are necessary for our legitimate interests:

  • in connection with our compliance with our legal obligations, including to adhere to our contractual obligations;
  • to administer our relationship with you;
  • to communicate relevant information to our membership, or to invite members to participate in surveys or research;
  • to communicate with active supporters who have donated to / fundraised for us in the last three years;
  • to determine how our limited resources might be used in the most effective way;
  • to resolve any complaints or disputes with you;
  • to protect our security, guard against fraud and other wrongdoing; and
  • to ensure optimal functionality and user-friendliness of the website.
  • It is also necessary for our legitimate interests to process your personal data for the following administrative purposes:
  • processing donations and Gift Aid declarations;
  • managing feedback and complaints;
  • keeping records of those in receipt of grants;
  • if you participate in an event organised by us, providing you with information in relation to that event;
  • sending you relevant information about a fundraising event in which you are participating (eg the London Marathon);
  • keeping our members and supporters informed of our activities and news (including through our newsletters and other communications), subject to direct marketing laws (see Direct Marketing section below)
  • facilitating and administering our social media pages and groups
  • maintaining databases of our volunteers and donors, e.g. to make sure that the personal data they contain is accurate and up to date; and
  • helping us respect your choices and preferences, e.g. if you ask not to receive marketing communications, we will keep a record of this).

We may also convert your personal data into statistical anonymised form to better protect your privacy, or so that you are not identified or identifiable from it.  Anonymised data cannot be linked back to you and is accordingly, no longer personal data.  We may use it to conduct research and analysis, including to produce statistical research and reports, for example to help us understand and improve the use of our website.

Direct Marketing

If you have opted into receiving communications from CHECT, from time to time, we will contact you to let you know about our campaigns and events, or to ask for donations or other support to enable us to continue our charitable work.

We make it easy for you to tell us how you want us to communicate, in a way that suits you. Our forms have clear marketing preference questions and we include information on how to opt out when we send you marketing. Opt in consent to CHECT communications is obtained from membership forms, when you sign up to receive our email news on the website, when you contact us to become a fundraiser, or via third parties such as JustGiving, PayPal, GoCardless, CAF, Charitable Giving, Charities Trust, Enthuse, Give As You Live, RunforCharity, TCS London Marathon and Unity Lottery and event organisations such as Skyline. 

If you don’t want to hear from us, that’s fine. Just choose not to “opt in” when you provide your data, complete this consent form or contact us on 020 7377 5578 / info@chect.org.uk.

International Transfers

We will sometimes need to transfer your personal data to recipients based outside of the UK. The jurisdictions of these recipients may not provide the same level of protection to your personal data as provided in the UK. If we transfer your personal data outside the UK, we will only make that transfer where specific safeguards are in place to ensure the transfer is lawful (such as an adequacy decision or standard contractual clauses), where we have your explicit consent or where an appropriate exemption applies.

If you would like to see a copy of any relevant safeguards used by us to protect the transfer of your personal data, please contact us at info@chect.org.uk.


Sharing your personal data

We share your personal data with third parties, including:

  • regulatory bodies, courts, judicial bodies and law enforcement agencies, where we’re legally required to do so (such as, where necessary for any criminal investigations or as directed by any court order);
  • to perform our contractual obligations; and
  • to protect CHECT and our people (including our staff, members and donors);
  • our professional advisors;
  • with local authorities and/or social services in connection with healthcare or treatment; and
  • when we are processing personal data jointly with another controller (e.g. a Facebook, in respect of the CHECT Facebook page).

We also ask third party service providers to carry out certain functions for us. These include external mailing and customer relationship management (CRM) providers.  

How long is my information kept?

CHECT will only retain your personal data for a limited period of time and for no longer than is necessary for the purposes for which we are processing it. This will depend on a number of factors, including:

(a) any laws or regulations that we are required to follow;

(b) whether we are in a legal or other type of dispute with each other or any third party;

(c) the type of information that we hold about you; and

(d) whether we are asked by you or a regulatory authority to keep your personal data for a valid reason.

If you are a member of CHECT, we retain certain medical data which you have provided to us about you and / or your child and which enables us to provide relevant information and support to you. This includes retinoblastoma diagnosis and date of diagnosis, treatment information and level of visual impairment. We will retain this data indefinitely as a historical research record of retinoblastoma in the UK. If at any time you wish to cease your membership, or to remove this information from our systems, you can contact CHECT via any of the means mentioned above.

All supporters’ records are retained for seven years after they have made a donation in order to comply with HMRC obligations on claiming Gift Aid and for accounting purposes.

Where supporters have opted into CHECT news and communications, we will continue to process your contact information and details of your consent until such a time as you advise us that you no longer want to hear from us, either unilaterally or as part of our routine processes for checking that you are still happy to give your consent.

Who can access my information?

The personal data you have provided to us can be accessed by employees of the Childhood Eye Cancer Trust, and from time-to-time technical support staff at our external customer relationship management provider. Certain elements of personal data (name, address, contact preferences and fundraising information) can be accessed by selected volunteers engaged for database work. This access is subject always to compliance with applicable data protection laws.

InFocus, the magazine sent twice a year to members and selected supporters of the Childhood Eye Cancer Trust is distributed by an external mailing provider, on our behalf.

The names of supporters who provide us with a Gift Aid declaration are passed to HMRC in order for the Childhood Eye Cancer Trust to be able to claim Gift Aid back on these donations.


CHECT is committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place appropriate physical, electronic and managerial procedures to safeguard and secure the information we collect.


Our website uses cookies to provide you with the best possible experience and to allow you to make use of certain functionality. Further information can be found in our Cookies Policy.


Links to other websites

Our website may contain links to other websites of interest. We are not responsible for the content or functionality of any of these external websites (but please let us know if a link is not working by emailing info@chect.org.uk). In addition, some of our online support and fundraising groups and pages are hosted on third party platforms, including Facebook and WhatsApp. These websites are not covered by CHECT’s Privacy Policy, therefore you should exercise caution and look at the privacy statement applicable to the website in question.

Controlling your personal information

We will not sell, distribute or lease your personal information to third parties unless we have your permission or are required by law to do so. If you post online or send any inappropriate or unlawful content via any CHECT channels, CHECT may use your personal information to inform relevant third parties in accordance with applicable laws.

Your rights

Where our processing of your personal data is based on your consent, you have the right to withdraw your consent at any time. If you do decide to withdraw your consent we will stop processing your personal data for that purpose, unless there is another lawful basis we can rely on – in which case, we will let you know.

Where our processing of your personal data is based on legitimate interest, you can object to this processing at any time. If you do this, we will need to show either a compelling reason why our processing should continue, which overrides your interests, rights and freedoms; or that the processing is necessary for us to establish, exercise or defend a legal claim.

Where we are processing your personal data for direct marketing purposes, you have the right to object to that processing.

You have the right to (subject to applicable laws and certain limitations):

(a) access your personal data and to be provided with certain information in relation to it, such as the purpose for which it is processed, the persons to whom it is disclosed and the period for which it will be stored;

(b) require us to correct any inaccuracies in your personal data without undue delay;

(c) require us to erase your personal data;

(d) require us to restrict processing of your personal data;

(e) receive the personal data which you have provided to us, in a machine readable format, where we are processing it on the basis of your consent or because it is necessary for your contract with us and where the processing is automated; and

(f) object to a decision that we make which is based solely on automated processing of your personal data (however, we do not currently conduct any such decision making).

If you have a question or would like to exercise any of your rights in relation to our processing of your personal data, please write to:

Mr Richard Ashton, Chief Executive, Childhood Eye Cancer Trust, The Royal London Hospital, Whitechapel Road, London E1 1FR, or email info@chect.org.uk.

No fee will be charged unless the request is deemed excessive.

Alternatively, you can phone 020 7377 5578.

Once we have verified your identity you are entitled to obtain the following information about your personal data held by CHECT:

  • The purpose of the collection, processing, use and storage of your personal information;
  • The categories of personal information that CHECT holds about you; and
  • The planned retention period for your personal information.
  • You also have the right to lodge a complaint with the Information Commissioner’s Office.

Updates to this policy

We may update this policy at any time. When we do, we will post a notification on our website and revise the updated date at the bottom of this page and notify you as required by law. We encourage you to frequently check this page for any changes to stay informed about how we are helping to protect the personal information we hold.

This Policy was last updated in March 2024.