You are taking part in the UK-PBC Genetics Study. This study is managed by the University of Cambridge and is led by Dr Richard Sandford. The study was paid for by the Medical Research Council. It is aimed at finding genetic factors involved in primary biliary cholangitis.
This page describes how the study team will access and use your health and personal data. We refer to this as a “privacy notice” because it explains how we will use and look after your personal data.
Who will have access to my data?
The UK-PBC study team at the University of Cambridge will have access to your data. The study team will analyse the data collected about you to generate the results of the UK-PBC Genetics Study. The University of Cambridge is referred to as the “Data Controller” which means they have overall responsibility for looking after your data.
Consent for access to my personal data
Everyone taking part in the UK-PBC Genetics Study was asked to sign a Consent Form. As a reminder, you provided signed, written consent at the start of the study for your contact details to be held at the University of Cambridge. This meant that the study team could send questionnaires and other documents to you. You signed consent giving permission for the trial team to access your medical records. We will access your records via your hospital records and an organisation called NHS Digital who look after health and care information. We asked for consent to access your data from the date of your diagnosis with PBC.
Who are NHS Digital?
NHS Digital is an organisation that collects health and care data from NHS hospitals in England and Wales. Examples of the type of health data that they hold includes hospital admissions, operations, accident and emergency attendances and other health care information.
Why do you need my personal data?
We want to track the progression of PBC and to know whether you have had any hospital attendances or admissions, before and during the UK-PBC Genetics Study. The study team can then find out how genetic factors affect the course of PBC.
How will you access my data?
Data from your hospital will be uploaded by a Research Nurse collaborating with the study into a secure database only accessible by the UK-PBC study team.
We also will apply to NHS Digital for access to your health data. We will provide NHS Digital with your personal NHS number, date of birth and postcode to allow linkage to the data held by NHS Digital. This linked data will then be transferred back to the University of Cambridge using a secure, encrypted procedure. Only selected, named members within the UK-PBC study team will have access to these data.
Will my participation in the trial be kept confidential?
We would like to reassure you that all personal data has been handled as you would expect and has been kept strictly confidential at all times and in compliance with the Data Protection Act 1998.
Will my data be shared with anyone?
We will share pseudonymised data about you with other approved investigators – but only if you specifically consented to this when you joined the study.
Can I opt out of the UK-PBC Genetics Study?
You can opt out of the UK-PBC Genetics Study at any time. Simply contact us by telephone, email or post (please see our contact details, below). Please do not hesitate to contact us if you have any questions or queries about your participation in the trial.
When will the trial results be ready?
The UK-PBC Genetics Study will continue until 2020. The findings of the study will be reported to the NHS and published in relevant medical journals. We will also present the findings to doctors, nurses and other health and social care professionals in the UK. Ten years after the study has ended, all information will be fully-anonymised and you will not be identifiable in any way.
Address: The PBC Genetics Study Box 238, Academic Dept of Medical Genetics, University of Cambridge, Addenbrookes Hospital, Hills Road, CAMBRIDGE, CB2 0QQ
We would like to thank you again for taking part in the UK-PBC Genetics Study.