The Cleft Registry and Audit NEtwork (CRANE) is committed to protecting your privacy and always using your data responsibly.
We know that you are putting your trust in us by providing either your or your child’s personal data, and we want you to feel confident that we respect your privacy and rights.
By using our website, database (https://www.crane-database.org.uk/) or providing any personal data as explained below, you are accepting and consenting to the practices described in this policy.
If at any time you would like to change your information or how we communicate with you (or if you would like to stop receiving communications from us altogether), get in touch at firstname.lastname@example.org or call us on 020 7869 6610. We will not try to change your mind or ask for any more information other than what we need to process your request.
We want this policy to be transparent and comprehensive. If you have any questions or concerns after reading this policy, please share them with us so we can make sure they’re addressed.
We will collect and store the information you explicitly consent to. We do our best to make sure it’s clear what will happen when you provide consent through the information we provide in our leaflets and on our web pages.
When you use our website or read our e-mails, we’ll also collect information that your browser shares with us, like where you are in the world or what links you click on, but we don’t use this to identify you personally unless it’s necessary to provide you with a service you’ve asked for.
If you are a patient or parent/carer - CRANE may collect and process the following kinds of data about you:
If you are a member of a cleft team - CRANE may collect and process the following kinds of data about you:
We’ll use your information in the way you have asked us to, e.g. to send you emails or other communications, or to provide you with a service you have signed up for, etc. You can ask for us to change your details or preferences (or to remove you altogether) at any time (see ‘Your Rights’ below).
We’ll also use your information as part of our database to stay in touch about CRANE and make sure cleft care professionals can use our reports to provide the best evidence-based care they can for everyone.
If you are a patient or parent/carer - we use personal information held about you in the following ways:
If you are a member of a cleft team - we use personal information held about you in the following ways:
We won’t give, trade or sell your information to anyone else so they can contact you directly without your explicit consent. As described in our information leaflet, we only share a small amount of patient information with health and education providers, and we make sure they take good care of this data while they have it.
Parents and carers are asked for their full and informed consent at all stages and can withdraw their child from the database at any time. No identifiable information is included in reports or on our web pages.
In rare and extreme circumstances, we may have a legal obligation to share information with the police or other parties.
If you are a patient or parent/carer:
Only a small number of CRANE project team staff have access to our secure database which holds the personal information we may collect. Other personal information, e.g. sent in emails to staff, may be summarised and stored on our database if staff feel it is necessary to gather a complete record of your history with us.
As described in our information leaflet, we share a small amount of patient information from CRANE with health and education providers for the purpose of linkage. This helps give us more information about how cleft patients are affected, for instance in school, and how much they access healthcare services.
The health and education providers that we link to, and the datasets they share with us are listed below:
This linkage, detailed in the CRANE Data Flow Diagram, allows us to share findings with the public on similarities and differences in school results according to children’s type of cleft, the presence of other medical problems, and other factors about their care. We do not use any information in our reports that could be used to identify individual children, their families, or their schools.
If you are a member of a cleft team:
Only a small number of CRANE project team staff have access to our secure contacts database which holds the personal information we may collect. Other personal information, e.g. sent in emails to staff, may be summarised and stored on our database if staff feel it is necessary to gather a complete record of your history with us.
We store your data in a few different places for different purposes, but all of these places are secured and comply with all UK and EU data laws.
We store your data in two key places as detailed in our CRANE Data Flow Diagram:
Everywhere we store your data complies with strict UK and EU regulations on data security and protocols. This includes data centres based in the USA which work to ensure they are fully compliant for organisations, like CRANE, based in Europe.
By submitting your personal data to us, you agree to us transferring, storing or processing your data in this way. We take all reasonable steps to ensure your data is treated securely and in accordance with your right to privacy.
At any time you can email email@example.com or call 020 7869 6610 to ask for:
We’ll happily comply with any requests like these, and we’ll make it as easy as we can for you.
Please note that other websites we may link to should have their own privacy and data protection policies, and CRANE does not accept any responsibility or liability for these policies. Please check these carefully before submitting any personal data to these websites.
Find out more about your rights as an individual.
By continuing to use our website you will be deemed to have accepted these changes.
Questions and comments regarding this policy or any of CRANE’s data handling practices should be addressed to firstname.lastname@example.org where they will be passed on to the Data Protection Officer. At the time of writing, this is Amy Carnie, Information Governance Manager, at the Royal College of Surgeons (RCS) of England.