Researchers

researchers

This page is for researchers looking for ways to improve recruitment into a study or to see if a study idea is feasible.

Join Dementia Research improves the timeliness of study recruitment providing researchers will access to thousands of potential volunteers who want to be involved in research.

What can you do as a researcher?

  • Identify potential participants

  • Screen and contact volunteers

  • Run feasibility tests for future studies

“It is that it is often difficult to find the right people for a particular study.
Most of the time, we see people at our memory clinics, however, finding the eligible patients who satisfy the criteria and are willing to participate in different studies is a challenge… When a research study is listed on Join Dementia Research, researchers have the ability to add specific criteria for their study, and then match the patients with this."

Dr Paul Edison, Imperial College London

Interested in using the service?

Join Dementia Research has been established to support all ethically approved dementia research studies taking place in the UK.

NIHR Clinical Research Network (CRN) Portfolio studies 

Studies on the NIHR CRN Portfolio are routinely considered for inclusion on Join Dementia Research as part of the Clinical Research Network set-up process. If your study has not been added, please email research.jdr@nihr.ac.uk to discuss inclusion.

Other dementia studies and student research

We have extended the use of Join Dementia Research to all ethically approved dementia studies which are suitable to recruit from a register.

If your study is not on the NIHR CRN Portfolio and you would like to use the service you will need:

1) To complete the Join Dementia Research Study Application Form 
2) A Join Dementia Research Research Account and user training
3) Your study to have appropriate ethics approval
4) To provide an Lay Summary that meets INVOLVE guidelines

The Join Dementia Research office will support you during the application process. For further information on each of these stages, review the FAQs below and the information included in the application form.

Once we receive your completed application form, we will be in touch within 10-15 working days to discuss your application and any next steps.

 

About the service

Join Dementia Research is an easy-to-use service which allows people to register their interest in dementia research, so that they can be contacted about relevant research studies. The overall aim is to improve and speed up study recruitment, and improve volunteers access to research.

Join Dementia Research has thousands of volunteers who want to be involved in dementia research. The service helps researchers improve study recruitment, ensuring studies are delivered on time, to target.

The additional feasibility tool helps ensure future studies can be well informed, ensuring deliverability.

Studies on the NIHR Clinical Research Network Portfolio will be automatically uploaded from the National Institute for Health Research Clinical Research Network (NIHR-CRN) portfolio system, for further information please contact your nearest local CRN.

If your study is not on the NIHR CRN Portfolio, the first step is to complete the Join Dementia Research Study Application Form.

To use Join Dementia Research you will need to ensure your study has the appropriate ethical approval from the NHS, Social Care or university. If you have not yet applied for ethics you will need to include a standard statement included on our Join Dementia Research Study Application Form.

If your study already has ethics approval, you will need the Chief Investigator to sign the file note amendment (template on our Join Dementia Research Study Application Form). This is normally classified as a minor, non-notifiable amendment which should be attached to the Trial Master File and submitted with any other future changes. If you are unsure, check with your R&D Team.

Once you have applied for your study to be added to Join Dementia Research, we will contact you to arrange for you to receive user training. This will be provided online, face to face or via Webex. Training sessions are run each month. Join Dementia Research accounts are only issued to researchers recruiting to studies.

If you do not have an NHS employment contract, your employer / institution will need to sign a ‘Data Processing Agreement’ with ourselves. The Join Dementia Research office will contact you to discuss this, however please note this can cause a minor delay.

Yes. Access to Join Dementia Research is strictly controlled, and limited to approved researchers. As part of your training we will validate your identity, explain the rules and procedures and provide you with access to all appropriate usage policies. You will be expected to follow these policies at all times.

This depends on when you apply, and if we need to set-up a Data Processing Agreement. You should normally expect this process to take two to 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.

We like to run a short news item on every study that is added to Join Dementia Research. This helps us encourage new volunteers that might be particularly interested in your research. Our communications team will contact you to discuss what information we will need. We also love videos and films, and hearing you talk about your study can be very helpful.

If you do not want your study added to Join Dementia Research, or if it is a simple survey, we can sometimes help by simply tweeting a link, or adding to our news or facebook sites. Email us on comms.jdr@nihr.ac.uk if you would like to discuss.

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. through email, by telephone etc.).

Each volunteer provides up to hundreds of pieces of information, some of this is used for matching, some 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 an 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 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 do this in many ways e.g. contributing to news stories, tweeting, telling your patients, family and friends. We try to include a news item on every new study that is added to Join Dementia Research, so be prepared to share or record a short film.

You can also 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. Join Dementia Research is funded by the Department of Health and delivered by the National Institute for Health Research in partnership with Alzheimer Scotland, Alzheimer's Research UK and Alzheimer's Society - www.joindementiaresearch.nihr.ac.uk.