INCLUDE Study Information sheet
If you wish to take part in a research study, you can do this one of two ways:
Speak to your NSFT clinician to find out about research opportunities which may be suitable for you. You may be asked by your NSFT clinician if you are interested in hearing more about what research studies are currently available too. You are completely free to say no to hearing about research, and can change your mind at any time.
Sign up to one of the national research databases. Most of the larger studies we run in NSFT are listed on one or more national databases. For any type of condition and study, you can visit the UK Clinical Trials Gateway and search for studies in Norfolk. If you are living with or caring for someone with dementia, or an interested healthy volunteer, you can also register you and your loved one to Join Dementia Research.
In addition we have a list of common questions below that may help with this:
Q: I am a carer looking after someone lacking capacity to consent into research, can we still get involved? Yes you can, if there is a study that is suitable for the person you care for, than there will be a process in place to take into account. 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.
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 cost (if there are any) and can sometimes include 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, you normal care should usually not be affected if you take part in a research study. But any impact on your care will be fully explained to you before you take part and it is fully 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 met our high standards for research.
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. 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. Q: Why can't you put more information up about the research studies?We can only make available as much information about a study as has been approved by NHS Ethics committees. If you have additional queries about a study than you can speak to NSFT Research who will do their best to assist or refer you to the right person. 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 do not feel comfortable contacting the study team than please provide anonymous feedback via the participant survey here.If you have any other questions that are not answered here please email us at firstname.lastname@example.org