Share this

Get Involved

Permission to Contact

If you are interested in participating in studies about neuroprogressive disease and dementias, please complete our online form or sign up to Join Dementia Research.

Partners In Research (Patient and public involvement)

If you are interested in helping to shape and refine research, as a person with neuroprogressive disease or dementia, a carer or as an interested member of the public, you have the opportunity to get directly involved in the network and help individual researchers develop their ideas. You can do this by attending local focus groups, reviewing scientific papers, helping us plan our conferences or reviewing research project applications before they are submitted for funding. This can improve the quality of the research study and help secure the necessary funding.

For researchers, we already have a team of people with neuroprogressive disease or dementia, or carers of those, willing to help you with your research in a variety of ways. Some are willing to review study protocols, comment on your research questionnaires or give you a lay opinion of your research question or Patient Information Sheet.

Having affected individuals and their carers involved in your study design can improve the quality of your research, check that the research question is relevant to people and provide feedback on the clarity of your lay summary or plans for public involvement during the study.

If you are a researcher and you would like some public input into your study please contact us on 01382 423086 or TAY.ndntayside@nhs.scot.

Join Dementia Research

Join Dementia Research is a nationwide online and telephone service which helps people take part in research studies. It will accelerate the pace of dementia research by connecting people with and without dementia with researchers.

Anyone aged 18 years or over can sign up themselves, or on behalf of someone else, either by:

  • registering online at www.joindementiaresearch.nihr.ac.uk
  • contacting the helplines of Alzheimer Scotland (0808 808 3000 – free to call, open 24 hours a day, 365 days a year) or Alzheimer’s Research UK (0300 111 5 111).

By signing up to the service, people give permission for researchers to contact them with details of studies in their area that match their profile. People can then decide if they would like to participate in those studies on a case-by-case basis. By registering, people do not have to take part in any studies and can opt-out at any time.

Dr Emma Law, Neuroprogressive and Dementia Network Manager, said: “Join Dementia Research (JDR) is an exciting opportunity to provide the public and researchers in Scotland access to high-quality studies across the full range of dementia research. As a tool for connecting researchers and members of the public affected by neuroprogressive disease and dementia, its reach and scope is almost unprecedented, and we are glad to be able to work with and support this initiative however we can, now and as it develops further.”