Norwich Clinical Trials Unit (NCTU) is registered with the UK Clinical Research Collaboration's Registered CTU Network, part of the NIHR's activities to fund, support and implement high quality research.
The NCTU Privacy Notice has information about data protection throughout the NCTU and also has links to the UEA's ICO registration.
If you need any further information about our data processing please contact: ARRISA-UK Study, NCTU, MED, UEA, Norwich NR4 7TJ - 01603 593309 - ARRISA-UK.firstname.lastname@example.org
ARRISA-UK Study data protection and processing information
Who we are
The Data Controller for ARRISA-UK is the University of East Anglia (UEA). This means that we (the ARRISA-UK study team and the Norwich Clinical Trials Unit) form part of the University, which determines why and how personal data will be collected and used, either alone, or jointly with others.
The UEA is also a data processor for the ARRISA-UK study data received by other organisations. This means we follow the instructions of these organisations when handling certain personal data.
The ARRISA-UK study team abides by the University’s data protection-related policies, listed on our webpages.
Further details, including information about your rights
You can find general information about your rights, and the University’s data protection practices and obligations, in this web page.
How to contact us
You can contact the study office on 01603 593309 or email@example.com.
You can contact the University's Data Protection Officer at firstname.lastname@example.org or by telephone on +44 (0)1603 59 2431.
What we do with personal data
The ARRISA-UK study team hold personal information about 3 different groups of people:
1. Business, research management and administrative contacts at organisations that we interact with to perform our research
2. NHS staff at participating practices who participate in the study’s intervention and control activities
3. Consented participants in the study’s interviews and focus groups
- The study also holds anonymised data about patients at some GP practices. As this data has had all identifiers removed, it is not personal data. A discussion of this data is at the bottom of this page.
For all of these groups, the lawful basis for holding and processing the data is that the study is a task in the public interest.
What information is held, why, and how it will be processed, differs for each of these groups.
For business, research management and administrative contacts:
The ARRISA-UK study team needs to know your name, place of work, and contact details (a phone number and email address) to enable the team to administer the study from start to completion.
For NHS staff:
The ARRISA-UK study team needs to know your name, place of work, contact details (a phone number and email address), your professional role, and, if you complete the online training at http://register.arrisa-training.co.uk/, your age band and gender. This is to enable the team to administer the study from collection of expression of interests to study close down at participating practices. For example, if you are a member of GP practice staff we will use your details to contact you about study tasks, such as questionnaire completion, or about invoicing on milestone completion.
For both groups above:
We hold the information A) in order to conduct the ARRISA-UK research study including information required to administrate and implement the study and associated NCTU research activities; and B) the information required as part of our research analysis database - data needed to determine the outcome measures specified in the study protocol.
We will only keep this information in our own study management database, in direct communications (eg, email or letters) between you and the study team, and if relevant, in the training website database, both of which are stored securely and access controlled. When we prepare the database for the study analysis we will remove your name, any contact details and all other identifiers, and replace them with a separate unique code that does not identify you.
The only circumstances in which we may share your contact details are with specifically named and approved members of the study team, if essential for the implementation of the study (including OPC and APOLLO for data extraction tasks), or appropriate persons in your practice and relevant NHS NIHR research offices to enable administrative communication for the purpose of the study.
We will only hold your details for the minimum time required for the implementation of the study and for the secure archived trial master file, and will then destroy any directly identifiable personal data. You will never be specifically identified in any report or publication.
We will not share this information with anyone, or use it for any other purpose outside of those specified above.
You have the right to request to see your personal data that we hold, and to request that we modify or withdraw your personal information from the study records.
For consented participants:
The information held and how it is processed is detailed in your participant information sheet and consent form. Please refer to those documents. If you have questions about that or do not have your copy to hand please feel free to contact the study office on 01603 593309 or email@example.com
Regarding Anonymised data from patients who are of interest for the ARRISA study
The ARRISA-UK study team does not need to know, and it does not collect ANY identifiers (name address postcode, date of birth, or other identifying codes or data) for this data. It only needs to know the relevant recent prescription and clinical history of individuals as specified in our research ethics approved protocol. This will permit the analysis needed for our study. Therefore for this information we cannot identify you.
No data is collected held or processed for any patient who has record in their GP data that they have expressed dissent from data sharing.
We will only hold the data for the time required for the implementation of the study and for the secure archived trial master file. It will then be securely destroyed. We will not share this information with anyone, or use it for any other purpose outside of analysis for the research protocol, any analysis associated with the review and publication of the study results or as otherwise suggested by the NIHR HTA, Asthma UK or the Asthma UK Centre for Applied Research, or subsequent analyses conducted at NCTU by the named study collaborators for the purpose of understanding the study results.
Because we cannot identify the data as coming from any specific person, we are unable to say what data we hold about any person or to respond to any request to withdraw any person’s information