Frequently Asked Questions
Q: I am a carer looking after someone who cannot consent for themselves to take part in research, can we still get involved?
Yes, You can still take part in a number of studies. If there is a study that is suitable for the person you care for, than there will be an approved process to involve both of you in research in a way which is safe and supportive. Please make sure you speak to the named research study contact for more details about this. There may also be opportunities for you to become involved as a carer participant in your own right.
Q: Will getting involved in research cost me anything?
The majority of research studies reimburse you for any costs that you incur due to the research itself, these usually include travel costs (if there are any) and can sometimes include additional reimbursement for your time. Taking part in research should not cost you any money.
Before you agree to take part in any research project you receive a Participant Information Sheet, including information about any reimbursement you receive as part of the research study. It is really important that you take time to read this properly as this should give you a good idea of what impact the research has on your time and also what to expect.
Q: Will getting involved in research affect my normal care?
No, your normal care should usually not be affected if you take part in a research study, except if you are being offered a new treatment that is being tested. But any impact on your care will be fully explained to you before you take part and it is your decision to continue to be involved with a research study past this point.
Q: Is the research safe?
As with anything there are risks to taking part in research, BUT these risks are minimised through a strict review and approval system both locally and nationally. Your study is always reviewed to look at ethical issues and whether it is suitable to run in this environment. Approvals are always granted with you the participant at the centre and lay representatives and service users are involved in the approval process. You will never be introduced to a research study at NSFT that has not been thoroughly reviewed, assessed and deemed to be high-quality and safe.
Q: Will you share my details with anyone else?
No, when you join a research study any personal details that you give are kept secure and confidential within the research team. Prior to consent your details will never be shared with anyone else outside of staff on the research study.
How your information is used and who has access to it is clearly explained in the information sheet you receive at the start of a study. If the study requires your personal information to be sent to external organisations (such as a university), this will be explained to you before you consent onto the study and we will ask you to provide consent for this.
Q: Who funds the Research?
Most of the research we do is funded by national non-commercial research funders, who award research funding after an indepth competitive peer-reviewed bid process. The primary funder of the work we do is the National Institute of Health Research. We also receive some funding from Research-active charities and research councils.
Rarely, we also become involved in Industry research funded by Pharmaceutical companies. Where this is the case, the study record on this site is marked by an 'INDUSTRY' label. Q: What happens if I change my mind about being involved in research?You always have the right to withdraw from a research study. Information about how you withdraw is explained to you within the study information. Withdrawing from a study does NOT affect any care you are receiving from NSFT. Although you do not need to provide a reason for your withdrawal, often we find this is useful information to help improve our services and the design of future research projects.Q: I have a complaint about a research study I was involved in – what do I do?You are given information in the study documentation about how you can raise concerns, so please use this if appropriate.
If you have any other questions that are not answered here please email us at firstname.lastname@example.org