Carers are invited to be part of the research interest register and are encouraged to contact us if they want any more information about the network or any of the studies.
As a carer 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.
What does being on the register involve?
Your name, address, telephone number, date of birth and sex will be entered onto a computer database. Should researchers have a research study approved by the Scottish Dementia Clinical Research Network that you as a carer for someone with dementia might be a participant in, we will provide the researchers with your details so that they can contact you about it. 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. We record your date of birth, sex and address because some studies might only be relevant to women or younger carers or people living in certain areas. We will keep your details on the register even after the person you care for dies because people who have been bereaved may still wish to participate in research about their experiences. Having your details on the register in no way commits you to participating in any research you might be contacted about.
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 or the person you care for receive from the health service. The register is for the purposes of research and is not part of any support 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 of the person you care for from the health service.