If you are a person with dementia and have any queries about the register, studies or the network we would be delighted to hear from you.
You are invited to have your details recorded in the Scottish Dementia Research Register.
What is the register about?
The register will provide a central database of people with dementia and carers of people with dementia who are happy to be contacted about research into the causes and consequences of dementia. It will also allow researchers to link databases together for the same purpose without contacting you.
What does being on the register involve?
Your name, address, telephone number, date of birth and sex will be entered onto a computer database. We will also ask you and/or a healthcare professional who looks after you for medical information about your condition (how good your memory is, how it affects your daily routines, any changes to your mood, behaviour and other symptoms related to your mental well being) and any other medical conditions you have that might affect your general health. We will also ask you for contact details of a carer who could also be contacted about you taking part in any research studies.
Should researchers have a research study approved by the Scottish Dementia Clinical Research Network that you might be a participant in, we will provide the researchers with your details so that they can contact you about it. We record your personal details and medical information because this will allow us to determine if you are suitable to take part in a study. Having your details on the register in no way commits you to participating in any research you might be contacted about. Any research will have to be approved by the Scottish Dementia Clinical Research Network. We will not pass your personal details on to any commercial organisation. You can also choose to allow your details to be included in research studies about the causes and consequences of dementia where you do not need to be contacted directly.
Confidentiality and assurances about participation
The information we collect is completely confidential and the data will be stored securely and only released to researchers for studies approved by the Scottish Dementia Clinical Research Network that themselves have secure data storage arrangements and permission for storage of such data from the relevant ethics committee.
Your agreement to take part in the register is purely voluntary and does not affect any care or treatment you receive from the health service. The register is for the purposes of research and is not part of any treatment to benefit you directly. You can withdraw any time you likewithout giving any reason to network staff. Withdrawing from the register will not affect any treatment you receive from the health service.