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: *

Organisation name: *

Address: *

Telephone number: *

Email: *

Website:

Do you have an NHS employment contract? *

Yes

If yes, who is your NHS contract with?

Do you already have a Join Dementia Research account? *

Yes

Your study name:

REC / Ethics number for your study:

Who gave ethics approval? *

NHS

University

Social Care

Research funder: *

Number of volunteers required from Join Dementia Research: *

Is your research study part of a PhD or Masters degree?

PhD

Masters

Other

not applicable

Clear selection

Geographical scope: *

(Give description and example e.g. by region and / or distance from site)

Planned opening date on Join Dementia Research:

YYYY

Planned closing date on Join Dementia Research:

YYYY

Please provide a brief lay summary of your study answering the following questions:*

The plain English summary of your research study needs to have enough information to help someone, including those with dementia, or their carers, decide if your study is suitable for them. You should be mindful of people's experience and consideration of the words used, that should be respectful (avoiding research terminology or language that may be upsetting for the reader living with or supporting a person with the condition). Many people with dementia will find reading and understanding written information difficult.

Background to the research (In Layperson terms)

● Why is this research being done? Give 1 or 2 sentences as a background to why your research is important in the field. Aim(s) of the research ● 2 to 4 sentences maximum. What are you aiming to find out? Sets the scene ● Briefly mention here if there has been any Patient Public Involvement in the design of the study.

What does the study involve? (In Layperson terms)

● What taking part in the study will involve for the volunteer. For example, what tests will be done? how is the study drug administered? what is the intervention? is it a one to one interview? ● Where will the study visit take place .i.e. in a hospital or home ● How many visits there are ● How long will the study run for/how long will the volunteer be involved in the study?

Participants - Who you are looking for (In Layperson terms)

● What eligibility criteria do the volunteers need to meet? ● Person with dementia, carers or volunteers without dementia? ● If the volunteers require a diagnosis of dementia please state which type of dementia and whether symptoms need to be whether mild, moderate or severe ● Is there an age range? ● Are there any exclusion criteria (pre existing medical conditions, medications, pacemaker fitted etc)

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).

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 5 November 2019.

Further information on preparing studies for Join Dementia Research can be found on the following link:

https://sites.google.com/nihr.ac.uk/jdr-delivery-site/researchers/preparing-a-study-for-jdr

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

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