VOLUNTEER INFORMATION SHEET

 

Download a printable version of the Volunteer Information Sheet (Version 5.1) (.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.  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 national service where members of the public can register their interest 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 matched to research studies in which they may be eligible to participate. Research teams can then use that information to get in touch to confirm suitability for the study and invite registered volunteers to take part. Volunteers have no obligation to take part in any study on Join Dementia Research.

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 looking for different volunteers.

Who can register?

Anyone, aged 18 or older, who lives in England, Scotland, Wales or Northern Ireland can sign up to use Join Dementia Research.

Most of those research studies using Join Dementia Research will be looking at ways to prevent dementia, ways to treat or care for those with memory problems or dementia, or to improve quality of life for people who care for someone with 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 sign a declaration to confirm you are happy for the data you submit to be accessed by the partners delivering the service as well as research teams. 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. They will need to have your consent. If you do not have capacity to consent, someone with lasting power of attorney registered for you on health and welfare grounds can do so for you.

Alternatively you can sign up by phoning one of our charity Helplines. Please note that if you are registering for someone else, we will need to confirm their consent with them, or for you to have been registered as having lasting power of attorney for them on health and welfare grounds:

  • Alzheimer Scotland: 0808 808 3000
    24 hours per day, 7 days a week
    (Scotland)

  • Alzheimer's Research UK: 0300 111 5 111
    9am to 5pm, Monday to Friday
    (UK wide)

  • Alzheimer's Society: 0300 222 11 22
    9am to 8pm, Monday to Wednesday
    9am to 5pm, Thursday and Friday
    10am to 4pm, Saturday and Sunday
    (England, Wales, and Northern Ireland)

Calls to Alzheimer Scotland are free. Calls to Alzheimer’s Research UK and Alzheimer’s Society cost no more than a national call from any type of phone or provider and calls are included in any free call packages on landlines and mobiles.

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 for it to be 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 2018 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 staff at NIHR or agencies working on our behalf, 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 research organisations approved to use Join Dementia Research is available on our website, under our FAQ 12: 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 2018. 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 for 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 personal information will be pseudonymised so that an anonymous record will exist, which cannot be traced to you personally. You will not then be contacted about any further studies that use Join Dementia Research. If you have participated in a research study, or have given your details separately to a research team, you may still receive their communications.

Withdrawing from Join Dementia Research will not affect any existing research studies you have chosen to join or the standard of healthcare you receive. You also have the right to full deletion of any data we hold on you, which is a more thorough process than withdrawal from Join Dementia Research.

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

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

When registering with Join Dementia Research, all volunteers and representatives are asked to consent to their health status information (whether a person is deceased) held by NHS Digital to be released to Join Dementia Research.

In the event of the death of a registered person, this information is accessed by a senior member of the Join Dementia Research team at NIHR who is responsible for updating the user’s record (removing personal information and pseudonymising it) and therefore  updating and maintaining the system in accordance with the Data Protection Act 2018.

What if there is a problem?

We hope that you will have a positive experience using Join Dementia Research. However if you have a problem, please do one of the following:

  • If you have any problems relating to your clinical care, please contact your doctor.

  • If you have any problems relating to your participation in a particular research study, please contact the research team of that study. Contact details for the research study team can be obtained from the Join Dementia Research team at jdrdelivery@nihr.ac.uk.

  • Any problems relating to Join Dementia Research, can be addressed by contacting the Join Dementia Research team by emailing manager.jdr@nihr.ac.uk or by calling one of the helplines.

Our complaints procedure can be found at www.joindementiaresearch.nihr.ac.uk/policiesandprocedures

Who is Join Dementia Research funded by?

Join Dementia Research is funded by the Department of Health and delivered in partnership with the NIHR, 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' team at manager.jdr@nihr.ac.uk.

 

Thank you for taking the time to read this information.