Updated: 04 November 22

Introduction

In agreeing to these Terms and Conditions of Use, you are undertaking to ensure the protection and security of all data accessed by you in Join Dementia Research and to process all such data in accordance with the following conditions.

We expect you to use the Join Dementia Research system in a safe and secure manner. Our Terms and Conditions give clear advice and guidance about your responsibilities for keeping data safe when using the system.  This is for all users, including registered volunteers, representatives, researchers, NHS staff, members of a third party (such as our partner charities) or any other user. 

The National Institute of Health (NIHR) reserves the right to change these Terms and Conditions of use at any time. The date of issue of this version can be found at the bottom of each page.

Acceptable Use

Data within this service is owned by Department of Health and Social Care. Department of Health and Social Care is the Data Controller. Data can only be copied, downloaded or shared with 3rd parties with written permission and in line with these Terms and Conditions of Use. Specific queries can be made through the information contact listed below.

Join Dementia Research is a collaborative project funded by the Department of Health and Social Care and coordinated by the National Institute for Health and Research (NIHR) and Alzheimer Scotland, Alzheimer’s Society and Alzheimer’s Research UK.

Signing up with Join Dementia Research makes it easy for people to register their interest in taking part in dementia research; volunteers provide personal information about themselves and their health which is then shared with approved researchers looking to match volunteers to dementia research studies.

Users of this service will respect the privacy of personal data as described in the Join Dementia Research Privacy Notice.

You are expected to adhere to standard information security good practice, for example:

  • not sharing accounts,
  • choosing secure passwords
  • only accessing confidential information when you cannot be overlooked
  • not sharing data with people who are not authorised to see it.

This list is not exhaustive.

You are expected to:

  • adhere to any relevant data sharing/data processing agreements, memorandum of understanding or other such prevailing agreements.
  • respect the data that you are using in line with the Join Dementia Research Privacy Notice.
  • adhere to any prevailing legislation.

In agreeing to these Terms and Conditions, you are undertaking to ensure the protection and security of all data accessed by you in the Join Dementia Research system and to process this data in accordance with the following conditions:

For Registrants:

(a) Only provide information sufficient to ensure your registration onto the Join Dementia Research service and no more.

(b) When signing up for someone else, only provide their personal information if you have their consent to do so.

(c) In using Join Dementia Research, you agree to maintain your registrant record, updating the record with any change of details as required.

For NIHR staff, NHS Staff, Approved Researchers (NHS, Academic, Commercial and Non-Commercial) and other Organisations:

(a) All information and documentation accessed through the Join Dementia Research System should be treated with the strictest confidence at all times and managed under a duty of confidence in line with prevailing data protection legislation and, if appropriate, in accordance with any associated data sharing agreement in force at the time.

(b) Only relevant sections of registrants’ healthcare records may be accessed. All personal information of registrants should only be used by researchers for the purpose of matching volunteers to opportunities in dementia research that are listed on the Join Dementia Research system and any associated activities and nothing more.

(c) Ensure that you work in accordance with the guidance provided in the Join Dementia Research training. In particular, responding to volunteers within agreed timescales, working to ensure they have the best experience of the service possible and alerting the Join Dementia Research delivery team where you receive feedback that a volunteer is no longer able to take part in research for any reason.

For Partner Organisations (e.g associated Charities) and other Third Parties (e.g. IT Providers, Printers etc):

(a) All information and documentation accessed through the Join Dementia Research System should be treated with the strictest confidence at all times and managed under a duty of confidence in line with prevailing data protection legislation and, if appropriate, in accordance with any associated memorandum of understanding/data sharing/data processing agreements in force at the time.

(b) All personal information of registrants should only be used by partner
organisations for the purpose of their organisation’s role in administering the service.

(c) All personal information of registrants should only be used to provide relevant communications to them as per their preferred choices.

Service Availability

The NIHR Clinical Research Network endeavours to ensure that all information on the Join Dementia Research system is accurate and available in a timely manner. If you find inaccurate information please let us know by using the contact details below or provided through the system.

We endeavour to provide high levels of service availability. However availability at any point, particularly out of support hours, is not guaranteed. Support is limited to core service hours (weekdays hours).

Breaches of these Terms of Use

If you become aware of any breaches in use of this service and the data involved, then you should report it to crncc.ig@nihr.ac.uk

Access to accounts may be suspended without notice.

Intellectual Property

The intellectual property of this service and all materials relating to it belong to Department of Health and Social Care.

Further information and contacts

Further sources of information are:
●Join Dementia Research Privacy Notice for this service, which includes within it contact details for GDPR related information requests.
● Managing Your Information Policy , available via the home screen on the Join Dementia Research website.
● Email address for reporting security breaches: crncc.ig@nihr.ac.uk
● For queries about these terms and conditions: jdr.manager@nihr.ac.uk