Researchers
This section is for research professionals who are planning, or want to recruit into, a study.
The Join Dementia Research service allows you to see if a study is feasible, and to access thousands of potential volunteers across the UK who want to work with researchers.
If you’re enrolled as a researcher on our database, you’ll be able to search for volunteers who meet your particular study criteria – such as diagnosis, location and age. When potential volunteers are matched with your study, you’ll be able to both screen them and contact them directly.
“Join Dementia Research is an excellent recruitment platform that is easy to use and allows you to identify and screen participants based on your study criteria.”
Rubina Shah, Cardiff University
Once you’re on the service, you also have access to our dedicated support team who will guide you through the process and help you get the best results, enabling you to deliver a well-informed study successfully and on time.
“Recruiting through the service enabled us to access the attitudes and opinions of over 3,000 people, many of whom had been personally affected by dementia. The process was relatively easy and the support was first-rate.
Professor Richard Cheston, University of the West of England
How does it work?
In order to use Join Dementia Research as a researcher, you will need a research users account. Follow instructions to sign up for a research user account and complete the training, which will allow you to access the service and our support team.
Once signed up with the service, you’ll also be given access to Join Dementia Research’s feasibility tool to help you ensure you’ll get the potential recruitment numbers you need.
If your study is one that is registered on NIHR’s Clinical Research Network Portfolio, simply email research.jdr@nihr.ac.uk and the team will provide guidance on adding the study to Join Dementia Research. If your study is not registered on the NIHR’s Clinical Research Network Portfolio, you’ll need to fill in the study application form.
All studies that go on the service must have the necessary ethical approval from the NHS, the HRA or Universities. Your institution may also need to approve your use of Join Dementia Research through a data processing agreement as part of your study application form.
As part of the ethics submission process, the application form must list Join Dementia Research as a specific source of recruitment.
Our support team will then check your study application form and make sure that your study is suitable for the Join Dementia Research service before registering it online.
What are the advantages of using the Join Dementia Research service?
Participant recruitment within the necessary timescale is vital to the success of any research study. Our national database includes patients who have already been diagnosed, as well as their families, carers and other members of the public. Everyone registered on the service has agreed to take part in research, so the service provides an efficient way of reaching interested participants.
We work hard to promote the service in GP surgeries, hospitals, memory clinics and other healthcare settings across the UK, so we have a wide range of volunteers at every stage of dementia care.
Once you’ve signed up, access to our feasibility tool will help you ensure that your parameters are well-designed from the start, and that you have a representative pool of people.
Finally, we aim to improve volunteers’ access to research. We know that many patients want to take an active role in helping to find out more about their conditions and enjoy the process of participation, often providing vital feedback and contributions. We request that all our researchers share their final study results with the participants they have contacted through the service as a reasonable courtesy.
“The Join Dementia Research team was instrumental in our recruitment success. Communication with the team was smooth, and the website was transparent and easy to use. We reached almost 10,000 volunteers within 8 months, which exceeded our expectations.”
Dr Enikő Zsoldos, University of Oxford
About the service
Access to Join Dementia Research is strictly controlled, and so limited to approved researchers. As part of your training, we will validate your identity, explain rules and procedures and provide you with access to all usage policies. You will be expected to follow these policies at all times.
Once you complete the training, which is provided by NIHR Learn, the Join Dementia Research team at the NIHR Clinical Research Network Coordinating Centre will get in contact to issue you with a username and password and help you open your study.
Ethically approved dementia studies which can be matched to our volunteers, are entitled to to use Join Dementia Research, but the process may differ:
If your study is part of the NIHR Clinical Research Network Portfolio- one for which the NIHR has already agreed to provide support - it may already have been considered for inclusion on Join Dementia Research as part of the CRN set-up process. If so, we will have access to all the information needed. If your study is part of the Portfolio but hasn’t been added, please email research.jdr@nihr.ac.uk to discuss inclusion, or contact your local CRN.
If your study is not on the NIHR CRN Portfolio, you will need to do the following:
- Complete the Join Dementia Research Study Application Form
- Make sure your study has appropriate ethics approval
- Provide a lay summary that meets INVOLVE guidelines
The Join Dementia Research team will support you during this process.
Yes – as long as you are part of a research team for an ethically-approved study, you can use the Join Dementia Research service. We suggest that you email the Chief Investigator to explain your intentions; see our suggested wording for the email and file note that the Chief Investigator can attach to the study.
Your study must have the appropriate ethical approval from your institution, such as the NHS, a social care institution, or your university. If you have not yet applied for this you will need to include a standard statement about Join Dementia Research in your ethical application, and this wording can be found on our Join Dementia Research Study Application Form.
However, if your study already has ethics approval, you will need the Chief Investigator to sign the file note amendment. See our suggested wording for an email to ask the Chief Investigator to do this and a template for the file note that they can attach to the study.
This can take anything from a few days to three weeks, depending on the process and whether additional information is needed.
This depends on when you apply, and if we need to set up a Data Sharing Agreement first. You should normally expect this process to take between two and eight weeks.
If your study sits on the NIHR CRN Portfolio we will obtain information from the study protocol and Health Research Coordinated System for gaining NHS Permission (NIHR CSP). For all other studies, we will obtain this information from the Join Dementia Research Study Application Form. We will also ask you to supply a copy of your study's volunteer information sheet and protocol.
Are there any studies that won’t be suitable for recruitment via the Join Dementia Research service?
If your study is looking for a subset of people that we cannot match, we may advise you that your study isn’t suitable, e.g. a study looking for care home professionals.
Yes. You can recruit for as many studies as you are involved in, as long as you are assigned to those studies within Join Dementia Research.
When a study is entered on Join Dementia Research, a ‘matching criteria’ is set e.g. diagnosis, location, age etc. The criteria options will be discussed to ensure that only appropriate volunteers are matched, within the scope of the dataset.
For recruitment access, an authorised researcher assigned to an approved study will see a list of matched potential volunteers. This will include their personal demographics (e.g. contact details and geographical area) and some basic medical information (such as diagnosis, medication etc.), which will help the service match the volunteer’s information to your study criteria.
The service will show that a potential volunteer is interested in your study. You will also be able to see whether a volunteer is involved in another study, and how they would like to be contacted (i.e. via email, by telephone etc.).
Each volunteer is asked to provide over fifty pieces of information, to help with the matching process, to help you screen and some to help you contact them and understand their preferences. If you are interested in knowing the information requested in the volunteer sign up, you could sign yourself up as a volunteer using your personal email address.
For feasibility access, you will see the number of Join Dementia Research potential volunteers in particular geographical areas including anonymised unidentifiable demographic data (e.g. age, diagnosis). This can be filtered according to the study criteria.
Yes, your study information can be changed. To do this please contact us at research.jdr@.nihr.ac.uk or your NIHR local CRN.
Yes, once your study is opened on Join Dementia Research, volunteers who match your study criteria will be able to see your study information. However, only some information will be available for volunteers to view. This information includes the organisation or individual running the study, and a lay summary of the study to let volunteers know what is involved. The local site contact details or local researchers on the study will not be seen.
Volunteers will also be able to indicate their interest in your study. If a volunteer indicates they are interested, you will be required to screen them within five working days.
Yes. We encourage researchers to sign up as volunteers. If you would like to do this, please visit the volunteer sign up page, however please note that you cannot register using the same email address you use for your researcher account.
We expect everyone who recruits volunteers from Join Dementia Research to play a role in promoting the service and encouraging others to register. You can download materials such as leaflets and posters by visiting http://news.joindementiaresearch.nihr.ac.uk/join-dementia-research-materials/.
Researchers recruiting volunteers via Join Dementia Research are asked to credit the service for the support provided in any published research papers. Join Dementia Research is funded by the Department of Health and Social Care and delivered in partnership by the National Institute for Health Research, Alzheimer Scotland, Alzheimer's Research UK and the Alzheimer's Society. www.joindementiaresearch.nihr.ac.uk.