Get Involved

Permission to Contact

If you are interested in participating in studies for neuroprogressive diseases and dementias, please complete our online form or sign up to Join Dementia Research. Your details will be kept securely on our database. We ask for permission to access your medical records so we can screen your suitability for any potential studies, therefore, we will only contact you if we think you are a suitable candidate. You will also receive a welcome pack, which details what happens next, once you are on our research register.

Join our research register

Our privacy notice gives details of how your data is stored (plain text version available at the bottom of this page).

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

There are four main streams for people to get involved in as a Partner in Research. 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.

Our current Partners in Research talk about why they joined the group on our YouTube channel.

Partners in Research: Meeting updates Show more Show less

Patient and Public Involvement Input Requests

At this meeting we have been listening to researchers talk about their studies and how we can support them. We give feedback on how 'patient friendly' their information is and give suggestions based on real-life experience. Some of the group have become actively involved in particular studies.

Design and Develop Co-Research

There are 2 main projects which Partners in Research are currently involved with.

1. Experiences of Co-Researchers: Facilitators and Barriers to Co-Production and Patient and Public Involvement (PPI)

Two meetings have taken place so far, the recordings of which can be viewed on YouTube.

2. Co-creating a Support Package for People with Parkinson's Disease who may not be Eligible for Clinical Trials or whose Trial is Stopped Early

Six meetings have taken place so far, the recordings of which can be viewed on YouTube.

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.

Clinical Research Review

This group is paused at the moment and will be re-started once our new member of staff is recruited

Partners in Research: Newsletters Show more Show less

Our quarterly newsletters.

Partners in Research: For researchers Show more Show less

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 Show more Show less

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.”

Our Privacy Notice Show more Show less

Permission to contact for future research

When you provide personal information to an organisation, it is important both your privacy is maintained and that you understand how this information is used.

The following privacy notice explains exactly how NHS Research Scotland's Neuroprogressive and Dementia Research Network (referred to as the Network within this privacy notice) stores, processes and uses the information you have provided and why.

In summary, we use your information to get in touch with you about future research opportunities, and ensure that we offer you the right types of research opportunities.

The collection and storage of data for this purpose is called the Permission to Contact scheme. Please read and hold on to this privacy notice, as it explains this scheme in detail.

Why have I been given this privacy notice?

If you have received this privacy notice, it is because you have expressed an interest in taking part in research. One way to hear about research opportunities is to provide the Network access to your contact details and personal information so they can get in touch with you about appropriate studies. This is called the Permission to Contact (PTC) scheme.

If you would like to be part of the PTC scheme, it is important you understand why the Network is asking for this information, and what we do with it. Please read this notice, and if you need help ask a family member, friend or carer to go through it with you.

If you provide us with your personal data, we will understand that you accept and consent to the practices described in this document. If you do not agree with these terms, please do not provide us with your information; or get in touch with the Network in the first instance to discuss.

Do I have to take part in the PTC scheme?

No. If you have received this notice you are under no obligation to take part in the PTC scheme, and we will not contact you unless you provide us with your information.

Who are the Network?

NHS Research Scotland's Neuroprogressive and Dementia Research Network is an organisation of researchers distributed across mainland Scotland. The Network is funded by the Scottish Government through the Chief Scientist Office. It is responsible for running different types of studies across Scotland for people with dementia or other neuroprogressive conditions, such as Parkinson’s disease.

Where will you keep my information?

If you have provided information on a reply slip, this is physically stored in a safe in the Network central office in NHS Tayside. The information that’s written on the slip will be entered into a database which is based in the Health Informatics Centre (HIC), which is hosted by the University of Dundee.

Who will have access to my information?

Your information will be accessed by members of the Network. All members of the Network work in NHS Scotland, and will have received training about data protection and security as part of their induction.

More specifically, your information will only be accessed by members of the Network who also have access to HIC. Accessing HIC can only be done through an NHS computer and if you have a password-protected login.

Who are the controllers of my information?

The information that you provide us is controlled by the Network, which is based in NHS Scotland. Your health records are controlled by your NHS board, which will also be based in NHS Scotland.

What will you do with my information?

We will use your information to get in touch with you. We need information like your date of birth and postcode to ensure that we get in touch with the right person.

Importantly, we are also asking for your Community Health Index (CHI) number, so we can identify you and your health records (please see why below).

The CHI number which is made up of your date of birth and four random numbers. If you don’t know your CHI number, we should be able to identify you through the combination of your name, date of birth and postcode.

Why do you need to identify and access my health records?

Some studies have inclusion or exclusion criteria for its participants, and the most common of these relate to potential participants’ health, including what type of medication they may be taking or if they have a particular condition. Before we get I touch, if permission is granted, we will access your health records to make sure that we only offer you any studies that you are likely to be able to take part in.

Your health records will only be viewed by members of the Network and will not be passed to any third parties without your explicit consent.

When will you get in touch with me?

If there is a study that we think you may be suitable for, a member of the Network will get in touch with you as soon as we can. If you do not hear from us, it may be because there are no research studies that are appropriate for you at the time, although a study may come along in the future.

What kind of studies do you run?

The Network runs lots of types of studies, including questionnaire based studies, focus groups and clinical trials.

The Network management team are responsible for carefully reviewing and approving the studies that it runs. Most, but not all research projects, are clinical studies which require an NHS Research and Development approval and a Research Ethics Committee approval. These approvals ensure that each research project has been carefully reviewed to meet the strict standards required by the NHS.

We may also ask if you are interested in joining a research interest register, such as Join Dementia Research (JDR) or the Scottish Brain Health Register (SBHR). Being signed up to a register may give you access to different studies. If you are interested in taking part in a register, we will send you all the necessary paperwork to join.

Do I have to take part in a study?

No. You are not under any obligation to take part in research study. Even if you do decide to take part in a research study, you are always free to change your mind and can stop taking part at any time, and you do not have to provide a reason.

How long do you keep my details?

Your details will be kept on HIC indefinitely, unless you ask us to remove them.

What happens if my details change?

If your details change, such as your phone number or post code, you can get in touch with us by phone or email and let us know. We will update the information on HIC to reflect the change.

Can I remove my details from Permission to Contact?

You can remove your details at any time and without having to give a reason. The best way to do this is by phoning the Network on 01382 423086 and asking for all your previously provided details to be removed. Removing your details will not affect your rights or standard of care.

Alternatively, you can contact the Data Protection Officer at the University of Dundee by calling 01382 384441 or sending an email to dataprotection@dundee.ac.uk.

What are my rights?

The General Data Protection Regulation (GDPR) provides you with individual rights about how information (data) about you is used. This notice was written to make sure that these rights are being met.

GDPR provides you with the right to: be informed, request access, request rectification, have personal data erased, restrict and/or object to processing, request data portability and rights related to automated decision making including profiling.

For more information please visit www.ico.org.uk/for-the-public/

If you have any questions or would like to withdraw from the register please contact NRS Neuroprogressive and Dementia at:

Email: tay.ndntayside@nhs.scot
Telephone: 01382 423086
Post: Corridor M, Level 5, Ninewells Hospital & Medical School, Dundee, DD1 9SY

Research Areas