VOLUNTEER INFORMATION SHEET

 

Download a printable version of the Volunteer Information Sheet (Version 5) (.PDF).
Download a printable version of the Volunteer Information Sheet (Version 5) in Welsh (.PDF).
Download a printable version of the Welcome Booklet (.PDF).
Download a printable version of the Welcome Booklet in Welsh (.PDF).  
You are being invited to be part of Join Dementia Research, a service that collects information about people who are interested in taking part in dementia research.  Before you decide whether to join, it is important for you to understand what Join Dementia Research is and what is involved.  Please take time to read the following information carefully.  You may like to talk to others (carers, family members, and friends) about registering.  Ask the Join Dementia Research team if there is anything that is not clear, or if you would like more information.  Take time to decide whether or not you wish to be part of Join Dementia Research .

What is Join Dementia Research?

Join Dementia Research is a list of volunteers who are interested in taking part in research that is focused on the diseases that cause dementia.  It allows people to provide information about themselves so that they can be contacted about relevant research studies for which they are eligible to participate. 

What are the benefits of registering?

By signing up to use Join Dementia Research, you increase your chances of being asked to consider taking part in ethically approved dementia research.  Many people find being involved in research a rewarding experience and they enjoy the contact with research teams.  All studies using Join Dementia Research will have been approved by a Research Ethics Committee.  This means that they have been checked to make sure that they protect the rights, safety and wellbeing of people involved in research.

Although taking part in a research study may not be of immediate benefit to you, it might help people in the future.

It is also possible that there will not be any suitable studies for some volunteers, but new research studies are starting all the time which may be suitable. 

Who can register?

Anyone who lives in England, Scotland, Wales and Northern Ireland can sign up to use Join Dementia Research

Most of the research studies using Join Dementia Research will be looking at ways to treat, prevent or care for those with memory problems or dementia.  However, you do not have to be diagnosed with dementia to sign up.  Healthy volunteers, as well as carers or families of people with dementia, are needed for some research studies. 

Do I have to register?

No, it is your free choice whether you sign up to use Join Dementia Research or not.  If you decide to sign up, you will be asked to provide consent.  Whatever you decide, it will not affect the standard of healthcare you receive.

How do I register?

If you decide to sign up to Join Dementia Research you can do it online at www.joindementiaresearch.nihr.ac.uk. If you cannot enter your details yourself, you can nominate a representative to do this for you.  Your representative can be your carer, a family member or friend or could be a healthcare professional.

Alternatively you can sign up by phoning one of the charity Helplines.

What will happen if I decide to register?

Once you have created your account you will then be asked to provide some personal information.  This includes your name, date of birth, contact details and some basic details about your health.  Before you send this information to be uploaded onto Join Dementia Research, you will be asked to consent to it being used to help find studies that might be a suitable match for you. 

All information will be processed in accordance with the Data Protection Act 1998 and held securely using a secure business enterprise Google platform. Access to information is controlled and monitored at all times as detailed in the Access Control Policy. The security of Join Dementia Research website is managed by the National Institute for Health Research Clinical Research Network Coordinating Centre (NIHR CRNCC), under a contract from the Department of Health. All system related policies can be found at the bottom of the webpage under ‘Policy’, or by asking a member of the Join Dementia Research team.

Who will be able to see my information on Join Dementia Research?

Your information is managed by a team of staff based at the NIHR CRNCC. Only the Join Dementia Research management staff at NIHR CRNCC, approved researchers, NHS staff and the charity Helpdesks registered to use Join Dementia Research will be able to see your information.

Approved researchers may be employed by the NHS, commercial organisations or universities, pursuing activities for medical benefit.  All researchers are assessed and approved on the basis that their employers are signed up to our terms and conditions, and data processing agreements; and that they are working on ethically approved studies. Researchers only access your information on Join Dementia Research in relation to studies that you match to.

A list of organisations approved to use Join Dementia Research is available on our website www.joindementiaresearch.nihr.ac.uk/help

Who will be able to see my medical records?

The information on Join Dementia Research is held separately from your medical records kept by your GP and/or your hospital consultant. In some cases, a researcher may also wish to view your medical records.  The extra details in your medical records will help them to assess whether they should approach you to think about joining a particular study.

When signing up to Join Dementia Research you will be asked for your permission for your medical records to be looked at.  Only approved researchers and NHS staff that have been assessed in accordance with “Research in the NHS Human Resource (HR) Good Practice” will be allowed to access your medical records, and those accessing your medical records must follow the NHS Confidentiality Code of Practice and the Data Protection Act 1998.  This means that they will only view information from your medical records that is relevant to assess whether you may be suitable to be contacted about a research project, and must keep your information secure.  They will not disclose any information from your records to any unauthorised person.  Unauthorised disclosure by any researcher of any information from your records is a criminal offence and may lead to their prosecution.

Who will contact me about relevant research studies?

You will be contacted by a member of your healthcare team, or by a member of the research study team carrying out the research in which you have been deemed suitable to participate, to explain the study to you.  When you sign up to use Join Dementia Research, you will be asked how you would prefer to be contacted (for example by phone, letter or email). 

You can choose whether or not to take part in any research study.  Your choice will not affect you being on Join Dementia Research.  You will always be in control.  Join Dementia Research will record which studies you take part in.

What will happen if I want to withdraw from Join Dementia Research?

You are free to withdraw your information at any time without giving a reason.  Your information will be deleted.  You will not then be contacted about any further studies.  Withdrawing from Join Dementia Research will not affect any existing research studies you have chosen to join or the standard of healthcare you receive.

If you decide that you no longer wish to remain on Join Dementia Research, you must inform the Join Dementia Research Manager (manager.jdr@nihr.ac.uk) or telephone the Helpline numbers.

What is the process for identifying and removing the details of people who have deceased?

All volunteers and representatives will be asked to consent to their health status information (whether a person is deceased) held by the Health and Social Care Information Centre to be released to Join Dementia Research. This information is accessed by a senior member of Join Dementia Research team, based at NIHR CRNCC, who is responsible for updating the user’s record (deleting this record) and therefore updating and maintaining the system in accordance with the Data Protection Act 1998.

What if there is a problem?

The Join Dementia Research Manager will help solve any problems you have whilst using Join Dementia Research. You can contact the Join Dementia Research Manager at manager.jdr@nihr.ac.uk.

If you are unhappy with the way you have been dealt with during a research study and wish to complain formally, you must do this by contacting the actual research study team.  Contact details for the research study team can be obtained from the Join Dementia Research Manager.

Who is Join Dementia Research funded by?

Join Dementia Research is funded by the Department of Health and delivered in partnership with the NIHR CRNCC, Alzheimer Scotland, Alzheimer’s Research UK and the Alzheimer’s Society. 

Contact details

If you require further information or would like to discuss any aspect of Join Dementia Research please call one of the Helplines.

Alternatively, you can contact the Join Dementia Research Manager at manager.jdr@nihr.ac.uk.

Thank you for taking the time to read this information sheet.

 

V5 Published 01/2015