Privacy Notice

In May 2018 a new General Data Protection Regulation (GDPR) came into force which is designed to give you more control over how we will use your data. Ensuring that personal data are collected, stored, used and shared securely is an essential part of good research practice. GDPR also defines specific roles with duties and responsibilities to protect the rights of subjects whose data are collected. The two most important roles are: the Data Controller and the Data Custodian.

The SABRE Study is part of University College London (UCL). For the purposes of data protection law, UCL is the entity that determines how and why your personal data is processed and so is the Data Controller.  The Director of the SABRE Study is responsible for overseeing the way in which the study team looks after your data on a day to day basis and acts as the Data Custodian.


Our commitment to you

  • We will ensure that your personal data are processed lawfully, fairly, transparently, and for a specific purpose.
  • We are interested in long term changes to health. We are still in the process of collecting data, and we have  set a 25 year time limit for how long we will keep your data after the end of the study.
  • We do not conduct research with the aim of commercial gain – all our research aims to benefit society and is not for profit.
  • Taking part in our studies is voluntary and you are free to withdraw at any time without giving a reason.
  • Confidentiality is very important to us. Internal and external researchers do not see your name or any other personally identifiable information, they only see an ID number. Before having access to your data they also sign confidentiality agreements and as a precondition they must complete annual data training.

Personal data that we collect about you

Personal data, or personal information, means any information about an individual from which that person can be identified, such as your name, date of birth and contact details (address, phone number, email address). We also hold ‘special category’ data about you, which may include details about your  ethnicity, religious or philosophical beliefs  and information about your health.

We will only use your personal data when the law allows us to. Most commonly, we will use your personal data in the following circumstances:

  • To manage our relationship with you
  • To help you with enquiries. Depending on the circumstances, this may include special category personal data.
  • To invite you to take part in data collections (home visit, clinic visit or for postal questionnaires).

Your personal data will be collected and processed primarily by our staff. Access to your personal information is limited to staff who have a legitimate need to see it for the purpose of carrying out their job within the SABRE study.

We may have to share your personal data with third parties for the purposes of:

  • Data processing – creating digital versions of consent forms, letters or address labels
  • Archiving – long term storage
  • NHS digital – linking to your health records

We will only share your personal details with these third parties under strict conditions set out in a legally binding data processing contract. This offers assurances about the use, access and security of any personal data provided to the third party and prevents them passing on or selling your personal data. We also use Royal Mail for posting questionnaires, sending invitations to take part in other face-to-face data collections (e.g. home visits, clinics or focus groups) and other correspondence associated with keeping in touch with you.


How we use your research data

We will only ever collect your data with permission, for example by asking you to attend a clinic or complete a questionnaire. Once we have collected it, it will be processed for research use, all personal information (name, address, date of birth, etc.) is removed and will be stored securely and confidentially using a unique ID. We will then provide this information to researchers on request and only under strict conditions.

Some research projects will require access to some of the sensitive information that has been collected with your consent:

  • Mortality, cancers and rare diseases – Subject to data sharing approval, researchers may be allowed to use grouped or ‘aggregated’ data, which minimises the risk of re-identification.  Data can only be accessed at the SABRE offices.
  • Location – We use addresses and postcodes to produce new information about your location (geographic data). Any potentially identifiable geographic data is only made available at the SABRE offices.

Participants may withdraw from the study and, if you do so, you may decide to allow us to keep information which we already hold about you or you may ask us to remove identifiable data or samples held for long-term storage. To safeguard your rights, we will use the minimum personally-identifiable information possible.


Lawful basis for Processing

Data protection legislation requires us to have a valid legal reason to process and use personal data about you. This is often called a ‘legal basis’. GDPR requires us to be explicit with you about the legal basis upon which we rely in order to process information about you.

In the context of research, the lawful basis upon which we will process your personal information is usually where “Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller” (Article 6 of GDPR):

Where we also collect and use sensitive personal information (special category personal data) we only do so where “the processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes… which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject”. (Article 9 of GDPR).


Your rights

Under data protection legislation you have individual rights in relation to the personal information we hold about you. For the purposes of research where such individual rights would seriously impair research outcomes, such rights are limited. However under certain circumstances, these include the right to:

  • access your personal information
  • correct any inaccurate information
  • erase any personal information
  • restrict or object to our processing of your information
  • move your information (portability)

If it is considered necessary to refuse to comply with any of your individual rights, you will be informed of the decision within one month and you also have the right to complain about our decision to the Information Commissioner.


Queries or complaints

The SABRE study aims to meet the highest standards when collecting and using personally identifiable information. We encourage people to tell us if they think that our collection or use of information is unfair, misleading or inappropriate. We would also welcome any suggestions for improving the way we handle your personal details.

If you have any questions about how your personal information is used, or wish to exercise any of your rights, please get in contact with us. You can also contact the University’s Data Protection Officer by telephoning: 020 7679 2000 or by writing to: University College London, Gower Street, London WC1E 6BT or by email: data-protection@ucl.ac.uk.


When was this notice updated?

We keep this Privacy Notice under regular review. It was last updated on 25th January 2019.

 

The SABRE Study group

The SABRE Study group:

Nish Chaturvedi (University College London) (Principal Investigator)

David Atkinson (University College London)

Norman Beauchamp (University of Washington, Seattle)

Innocent Bvekerwa (University College London)

Emma Coady (University College London)

Rory Collins (University of Oxford)

George Davey-Smith (University of Bristol)

Hakim Moulay-Dehbi (University College London)

Sophie Eastwood (University College London)

Shah Ebrahim (London School of Hygiene and Tropical Medicine)

Hannah Elliott (University of Bristol)

Nita Forouhi (Medical Research Council Epidemiology Unit, Cambridge)

Tim Frayling (University of Exeter)

Hassina Furreed (University College London)

Wladyslaw Gedroyc (Imperial College London)

Ian Godsland (Imperial College London)

Andrew Hattersley (Peninsula Medical School, University of Exeter)

Alun Hughes (University College London)

Rolf Jäger (UCL Institute of Neurology, The National Hospital for Neurology and Neurosurgery and University College Hospital)

Siana Jones (University College London)

Daniel Key (University College London)

Azeem Majeed (Imperial College London)

April McGowan (University College London)

Jamil Mayet (Imperial College London)

Rose Mullett (University College London

Chloe Park(University College London)  

Paul McKeigue (University of Edinburgh)

Martin Prince (Kings College London)

Shonit Punwani (University College London)

Caroline Relton(University of Bristol)

Marcus Richards (Medical Research Council,Unit for Lifelong Health and Ageing)

Naveed Sattar (University of Glasgow)

Dean Shibata (University of Washington, Seattle)

Lorna Smith (University College London)

Robert Stewart (Kings College London)

Therese Tillin (University College London)

Paul Welsh(University of Glasgow)

Peter Whincup (St George’s, University of London)

Emily Williams (University College London)

Suzanne Williams (University College London)

Andrew Wright (Imperial College London)

Visit 3, the 25 year follow-up (2014-2018)

SABRE Visit 3 (25 year follow-up visit) started in July 2014 and will end in January 2018. We are grateful to the British Heart Foundation for funding this research programme.

We are inviting SABRE participants, their partners and new African Caribbean participants to come to our clinic at University College London.  We will also ask them to complete 3 questionnaires about their health and lifestyle and to give permission for us to link to some of their health-related records, for example, regarding hospital admissions and GP visits.

The aims of the study are to build on what we have learned already  from the first study and from visit 2(2008-2011).  We will measure changes in the health of the heart and circulation, with a special focus on the health of the blood vessels of the brain, as well as  early signs of diabetes.    We also want to look at physical function and how well (or otherwise) people  are keeping as they get older.

The more we understand about what causes these problems, the more likely we are to be able to work out how to prevent  or to treat them in people of all ethnicities.

In our clinic we carry out detailed measurements of blood pressure and assess the health of the heart and large and small blood vessel using non-invasive measurements, such as echocardiography.  We will carry out  MRI scans of the brain, together with a test of memory and problem solving as at visit 2. We will measure levels of glucose and fats in the blood as well as some markers of inflammation and how well the liver, kidneys and lungs  are working.  There will be some simple tests of balance and eyesight.  A short exercise test (walking) will measure how well the heart and circulation are working during exercise.

Participants and their partners  who are unable to visit our clinic can still take part in the study by completing the health and lifestyle questionnaires and /or by giving permission for us to link to  their health-related records so that we can follow-up their health.

Click here to access Participant information sheets for the study.

Diabetes during follow-up (2008-2011)

Diabetes developed in 14% Europeans, 33% Indian Asians and 30% African Caribbeans between baseline (mean age:51.8±7.0) and follow-up (mean age:70.5±6.3).  Mid-life measures of insulin resistance, and of upper body fat deposition, were already unfavourable in people who developed diabetes a decade or so later, and were more adverse in the ethnic minorities.  Insulin resistance at baseline contributed most to explaining the ethnic minority excess of diabetes in both sexes.  Of obesity measures, adjustment for truncal fat provided the most consistent and independent attenuation of the ethnic differentials in both sexes- indeed. adjustment for truncal fat largely explained the ethnic differential in diabetes incidence in women, but in men however, a two-fold excess risk of diabetes remained after adjustment for family history, conventional lifestyle and cardiometabolic risk factors.  Our findings suggest that further study of risk factors throughout the life-course and/or a search for novel risk factors is required if we are to understand why ethnic minority groups are at such high risk of developing diabetes.