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UCL Priment Clinical Trials Unit

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Information for Participants

Please see below a list of FAQs and advisory links for participants who are or wish to take part in research at Priment CTU.

What is research?

People use research to try and find the causes of diseases and to find better treatments and services. There are many different types of research from surveys to clinical trials. All studies involving people require approval and you should be given detailed study information and an opportunity to ask questions.

If you have further questions about taking part in research, including "Why take part in research?" and "Deciding whether to take part in research", please see the NIHR Be Part of Research website.

These studies require different levels of involvement from people who take part in the research. People can be involved in planning research, helping to carry it out as well as taking part in research.

If you want to be involved in advising and assisting in the commissioning, planning and conduct of projects, please contact NIHR Evidence, a national advisory group, funded through the National Institute for Health Research (NIHR). Its role is to support and promote active public involvement in NHS, public health and social care research. 

Should I take part in a research study as a participant?

Research may bring benefits but it also has risks, which you should think about before you decide whether or not to take part. It is your decision to take part in research and you should not take part unless you feel that you understand what is being asked of you.

What is PRIMENT Clinical Trials Unit?

PRIMENT Clinical Trials Unit is a collaboration between the University College London (UCL) Research Department of Primary Care & Population Health, Mental Health Sciences Unit, and the Department of Statistical Science which conducts and coordinates medical research in primary care (usually your GP) and secondary care (usually the care you may receive in hospital).

All research conducted through PRIMENT CTU has been approved by the Health Research Authority (HRA).

What happens if I take part in PRIMENT CTU research?

If your general practice is taking part in research then you may be contacted to see if you want to take part. You will be given or sent study information to tell you more about the study and you can then decide if you are interested or not. Whatever your decision, your usual care at the practice will not be affected.

If you are interested then there may be questions you want to ask. The research nurse at your practice usually answers questions about the study.

If you decide to take part the nurse will ask for your written permission (or consent). You can still withdraw from the study at any stage, without giving a reason and this will not affect your care at the practice.

I am part of a study and want more information/help:

If you have any questions about a PRIMENT CTU study that you are involved with then you should contact:

1) The research nurse or doctor at your practice/clinic.
2) The study manager of the study you are involved in.

If you have any problems contacting the researchers from your study, you can contact the PRIMENT CTU  we will find someone to help you.

Confidentiality

All information collected about you during the study will be kept strictly confidential and in accordance with the General Data Protection Regulation (GDPR).

As a University,  UCL uses personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research.  

This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. 

If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible. 

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner's Office (ICO).

UCL's Data Protection Officer can be contacted on data-protection@ucl.ac.uk

Once the trial has been completed, study results will be presented at conferences and published in relevant medical journals. None of the people taking part in the study will be identified in these reports or publications.