Information and Consent

This page includes the information and details required to support you in making your decision to take part in the PROTECT study. It is important that you fully understand the information provided before you agree to take part in the study. This is a legal requirement for all research conducted in the UK.

The PROTECT study has been approved by an independent ethical committee and fulfils all the legal obligations. The key points of this legislation are outlined below. Further information is available in the information leaflet.

Is my data safe?

We understand that it is important for you to be confident that any data we hold about you is safe and confidential. We ensure this in the following ways:
  • Your data will be anonymous – all personal information such as your name and address will be physically separated from other data collection.
  • All data collected online uses secure encryption technology.
  • Storage of all personal information will be encrypted. Only a very small number of individuals will have access to the decryption software.
  • Any information which is kept in hard copy is stored in a locked cabinet in locked room, in a secure building with restricted access.
  • If you are involved in a study which requires DNA samples, these samples will be anonymous and identified only with a code.
  • The data collected will only be used only for the purposes of this study. This is explained further in our privacy policy.

What is consent and how does it work?

It is essential that all participants in the PROTECT study agree to take part of their own volition, and indicate that they understand what the study involves. There is no obligation to take part. Once you have provided consent you can withdraw from the study at any time.

When you give your consent you are agreeing that we can collect and store data about you according to the information provided in the information leaflet.

There are two forms of consent for this study which will be given separately:
  • Overall consent for online participation in the PROTECT study
  • Separate consent for participation in sub-studies. There will also be separate information leaflets and consent forms for each sub-study.

What happens next?

If you are happy to proceed and wish to register as a participant you need to complete the following steps:
  1. Download the information leaflet about this study for full details
  2. Register as a participant
  3. Read and agree to the consent information

Dementia Facts

  • Dementia is an umbrella term. It describes a wide set of symptoms including memory loss, mood changes, and problems with communication. These conditions are all usually progressive and eventually severe.
  • There are currently 850,000 people with dementia in the UK.
  • There will be over a million people by 2025 and over 2 million by 2051.
  • 225,000 will develop dementia this year, that’s one every three minutes.
  • Dementia currently costs the UK over £26 billion each year.
  • One in three people over 65 will die with dementia.
  • More than 25,000 people from black, Asian and minority ethnic groups in the UK are affected.