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Research Areas

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.

Join our research register

Partners In Research (Patient and Public Involvement)

If you are interested in helping to shape and refine research, as a person with neuroprogressive conditions (including MS, MND, HD, Parkinsons and 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. Professionals are also welcome to join us.

Become a Partner in Research

We are currently re-launching our Partners in Research from Friday 1 September 2023 and have created four main streams for people to get involved in. One of these meetings will occur each week, and you are free to join as many or as few as you wish. Current involvement includes online meetings, but may change as activities evolve. Please get in touch about individual access requirements.

Contact us on TAY.ppipartners@nhs.scot.

Partners in Research – meeting types

Clinical Research Review

These meetings will focus on the clinical research ongoing within the Network. We will explore the opportunities to support clinical research participation for people with lived experience of neuroprogressive disease.

Patient and Public Involvement Input Requests

Meetings will focus on the Partners in Research support requests that come in from researchers and organisations. The group will provide feedback and support to the research studies that fit with the group ethos.

Design and Develop Co-Research

Meetings will explore research ideas that are meaningful to Partners in Research. We will explore opportunities to co-research with people with lived experience and research expertise.

Monthly Drop-Ins

Meetings will provide updates on the three subgroups activities, as well as check in on how everyone is getting on, and what they would like to see Partners in Research do next.

Partners in Research - Newsletters

Our quarterly newsletters.

Partners in Research – for researchers

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.

Request public involvement in your study

If you are a researcher and would like to discuss our Partners in Research group, 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.”