Join dementia research - Non-CRN Portfolio Study Application Form

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. Further information on how the system works can be found at:

www.joindementiaresearch.nihr.ac.uk/content/researchers

This application form should be used by researchers wishing to recruit volunteers to dementia research studies which are not on the NIHR CRN Portfolio.

NOTE: the system enables researchers to identify and contact potential volunteers. To use the system you will need to be issued with a user account, undergo a one-hour training programme and your institution will need to approve your use through a Data Processing Agreement. This will be managed as part of your application, which can take 6-8 weeks.

If your study is on the NIHR CRN Portfolio, please email jdrdelivery@nihr.ac.uk to discuss adding your study to Join Dementia Research.

If your study is not on the NIHR CRN Portfolio, please complete the application form below, and a member of the delivery team will be in contact shortly.

Your name: *
Your answer
Organisation name: *
Your answer
Address: *
Your answer
Telephone number: *
Your answer
Email: *
Your answer
Website:
Your answer
Do you have an NHS employment contract? *
If yes, who is your NHS contract with?
Your answer
Do you already have a Join Dementia Research account? *
Your study name:
Your answer
REC / Ethics number for your study:
Your answer
Who gave ethics approval? *
Research funder: *
Your answer
Number of volunteers required from Join Dementia Research: *
Your answer
Geographical scope: *
(Give description and example e.g. by region and / or distance from site)
Your answer
Planned opening date on Join Dementia Research:
MM
/
DD
/
YYYY
Planned closing date on Join Dementia Research:
MM
/
DD
/
YYYY
Please provide a brief lay summary of your study answering the following questions:*
Aim(s) and background of the research (In Layperson terms)
What are you aiming to find out and how will patients / carers / members of the public and the NHS benefit from your research – either directly or in the longer term? Reason for doing the research (e.g. how many people are affected by the condition/area being researched). Benefits of taking part – immediate and/or future benefits.
Your answer
Design and methods used (In Layperson terms)
Describe how the study will be done (e.g. what tests people will have, where they will go to take part, how many visits, amount of time participant and/or carer needs to commit and any other demands on participants).
Your answer
Participants (In Layperson terms)
Describe the type of participants the study is looking for (e.g. diagnosis, taking particular medicines etc) and also describe the type of participants that cannot take part (e.g. very specific exclusions).
Your answer
Patient and public involvement and dissemination (In Layperson terms)
Briefly describe how the patients and the public have been involved in developing the research. Briefly describe how the findings of the research will be communicated and used (e.g. to influence practice).
Your answer
All studies using Join Dementia Research need to have appropriate ethical approval. If your study already has ethical approval, you will need to make a minor amendment. Please download the template to complete and attach to your master file:
https://drive.google.com/file/d/0B0SQhhpDz20Zc3g4UFMxTDNOZ3M/view
If you have not yet applied for ethical approval, please insert the following text into your application:
The following is a standard paragraph that chief investigators and study teams can use and insert into A27 of their IRAS REC form.

REC WORDING:

We will also be using Join Dementia Research (JDR) as a recruitment tool. This is an online self-registration service that enables volunteers with memory problems or dementia, carers of those with memory problems or dementia and healthy volunteers to register their interest in taking part in research.

The purpose of JDR is to allow such volunteers to be identified by researchers as potentially eligible for their studies. Researchers can then contact volunteers, in line with the volunteers' preferred method of contact, to further discuss potential inclusion.

JDR is funded by Department of Health working in partnership with the charities Alzheimer Scotland, Alzheimer’s Research UK and Alzheimer’s Society and is Health Research Authority (HRA) endorsed. The online service and all associated documentation, methods of contacting volunteers and handling of data, were reviewed by a specially convened HRA committee which included experts in research ethics, data protection and information governance. Formal endorsement was issued by the HRA in a letter dated 20 May 2014.
Further information on preparing studies for Join Dementia Research can be found on the following link:

https://sites.google.com/a/nihr.ac.uk/jdr-delivery/researcher/how-to-guides/preparing-studies-for-jdr

Thank you. You are now ready to submit your application.
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