Frequently asked questions

This FAQ page is for participants of the RADAR-CNS Clinical Program and provides answers to a wide range of questions about the project.

What should I know about RADAR-CNS?

What does RADAR-CNS stand for?

RADAR-CNS stands for “Remote Assessment of Disease and Relapse – Central Nervous System”.
RADAR- CNS is a research project to explore whether wearable devices can improve the way that depression, multiple sclerosis and epilepsy are measured, monitored and treated.

Who is running the project?

King’s College London and Janssen Pharmaceutica NV are leading this project. Many people, from all over the world, are involved in it.

The project leader from King’s College is Professor Matthew Hotopf. The project leader from Janssen Pharmaceutica NV is Dr Vaibhav Narayan.

How is the project funded?

Innovative Medicines Initiative (IMI) 2 Joint Undertaking funds the RADAR-CNS project. IMI supports research projects, such as ours.  They also build connections between industry and academic experts all over Europe, to speed up the development of treatments for patients. 

What is the purpose of the project?

This project aims to improve patients’ quality of life. We would like to support people and their healthcare team manage and treat their illness more effectively.

This project is looking at people who have, or have had, depression, multiple sclerosis or epilepsy. We would like to understand how easy or difficult it is for them to use a smartphone and wearable device to measure and monitor the symptoms of their condition.

In the future, it might be possible to tell in advance if someone’s health has deteriorated by analysing the information collected from the wearable device and smartphone.  However, more work will be needed before we reach that stage. The first step is to understand how well wearable devices and smartphones work for this purpose. 

What devices will I be asked to wear?

This depends on your condition. In most cases, it will be a type of fitness tracker that is already available in shops.  It will be discreet and comfortable to wear.

We will also ask you to use an app on your smartphone that connects with your wearable device. The app will ask you to answer short questions and surveys and will store all the information that is collects. This will take no longer than 15 minutes to complete.

We will help you learn how to use the device and app.

Do I need to know about technology to use the app?

We are aiming to design a service that can be used by everyone who is willing to take part in the study. So, we will give you a user-guide that will explain everything will need to know about go with your wearable device and the app.

We will also give you some face-to-face training other and there will be a team available for you to contact if you have any questions.

How does RADAR-CNS know what users want?

The team has set up a Patient Advisory Board. It includes people with depression, epilepsy and multiple sclerosis (MS), along with representatives from relevant support organisations (including Epilepsy Action, International Bureau for Epilepsy, International League for Mental Health) and carers.

We’ve also had discussion groups across Europe, to share ideas about how to make the devices easy to use. These groups provide feedback, give input and are involved in making very important decisions regarding the design of the studies.

We really value people’s comments because, for the project to be successful, we need to fully understand what help for people using the technology might need.

How will RADAR-CNS affect me?

What type of information will I get about my condition?

The wearable device will give us access to different aspects of your health, as it changes. In other words, we will get a picture of your current health through the information that is collected about your sleep, activity and communication patterns. This will help us track your mood and behaviour, to help us measure and monitor changes.

You will get very simple and easily accessible information about the number of steps you take, the number of hours you sleep, how many questionnaires you complete, and so on.

We will analyse the information that is collected from your wearable device and app, to find out if it is possible to predict if your condition will get worse.

The information we analyse will be encrypted (scrambled) and the information will also be de-identified – that means we won’t be able to identify who the information has come from.

From the wearable device, the things we will look at include:

  • The duration and frequency of your telephone calls
  • Your sleep patterns
  • Your speech patterns
  • Your heart rate
  • Noise in your environment
  • Your relative location (this means we will not know who you are, your exact location, just how often you go to the same place and how long you spend there)

 and monitor from the short questionnaires on the app, the things we will look at include:

  • Your stress levels
  • Your medication use
  • Your self-esteem

We understand that if you take part in our study, you will want to carry on with your life as normal. We aim to respect that.

We are aware that if you get too many alerts over a long period of time, this could be intrusive. So, we aim to have an option to silence notifications.

At the end of the study, you will receive a breakdown of the information that was collected about you. We will also explain what the research might lead to in the future.

Before you agree to take part in the study, we will make sure that you are fully aware of what will happen, by giving you a Participant Information Sheet. 

Will I have to pay for the devices?

No, we will be give you the wearable device for the duration of the study. We will also give you free training at the beginning, especially if you do not have a lot of experience with technology. 

Do I have to own a smartphone to take part in the study?

If you have an Android phone*, you can use that for the study. We cannot include IPhones users.

If you do not have an Android phone, there we will lend you one for the duration of the study.an option to be given but this must be used as your primary phone

*Not sure if you have an Android phone? Check for the Google Play Store app on your phone. If you have the app – then you have an Android phone. Android phones include Samsung, LG, Moto X, Sony, Lenovo and others.

Will people know I am taking part in this study?

Not unless you tell them!

The devices we will ask you to wear are available to buy in shops. Many people around the world, who are not part of this study, already use them. The phones are also very common, so you won’t stand out from other people by using them.

How long do I have to wear the device?

If you have, or have had, depression: We ask you to participate in the study for a maximum of two years, depending on when you join the study. We will analyse the information at the end of that time.

If you have multiple sclerosis: We ask you to participate in the study for a minimum of 6 months and maximum of 24 months, depending on when you join the study. We will analyse the information at the end of that time.

If you have epilepsy: We ask you to participate in the study for one year.

We will analyse the information at the end of that time.

Will I have to keep the wearable device on all the time?

You can take the device off if you want to, but we encourage you to keep the device on the whole time (other than when it is charging or if you are in deep water) throughout the study. We also encourage you to have your phone with you whenever you can. This will allow us to collect the most amount of information, which will help us with our research.

Will the wearable device improve my condition?

It is important to understand that participating in this study will not cure or treat your condition. However, at the end of the study you’ll be debriefed about all the information that was collected. This may help you understand your condition more.

Participating in research can be rewarding, and you will be contributing to the development of new knowledge, which could benefit other people in the future.

If you become unwell during the study, or if you can no longer take part, we will give you a risk assessment (free of charge) and ask you to contact your GP.

What will happen to my information?

Who can see my information?

Only the team directly involved in the research project will have access to your personal information. Your name, address, or any other information which identifies you will not be shared with anyone outside the research team.

For the analysis stage, your name will be replaced with a code, and the information collected from the app and wearable will only be associated with this code. The information will also be de-identified. This means that any information which might be linked to you, such as locations you visit or your voice, is removed, and not linked to your personal information.

Will my information be distributed or sold?

No. The information we collect from you over the course of the study is not for sale.

RADAR-CNS is not a commercial business. We are conducting the studies to be able to improve patients’ quality of life and change how illnesses might be treated in the future.

Will you track me?

We respect your privacy and we will not monitor your location. The location information we collect will be relative. This means that we will never be able to track exactly where you are, or what your location is. For example, we will not know where your home is. But we will know how long you spend at a certain location, and how often you go there. 

Will you be able to hear what I am saying at all times?

We will not listen to your calls or have access to the content of your calls/texts. Similar to location information, the speech information we collect will not record what you are saying.

If you give your consent, the app will record:

  • Where you are in general (such as a street, a bar, an office)
  • How busy it is (for example, if it is crowded or you are alone)
  • How much speech there is

However, if you are not comfortable with this, all these settings can be turned off. This will not stop you from taking part in the study.

If you consent, the app will record you:

  • Reading a poem or text on request, once every two weeks, (to check for pitch, tone, speed, patterns of your voice)
  • Describing what you’re looking forward to for the rest of the day (which will be analysed for content too)

However, if you do not feel comfortable with this, you may opt out. This will not stop you from taking part in the study. 

Are you interested in seeing the latest news?

We update our website regularly and are excited to share news & events here.

How can I help the research?

Click here if you would like to get involved in our research. 

Our goal is to better understand how to monitor your condition using mobile technology. We would very much value your input to help guide our research.

What if I have more questions?

Have questions that were not answered on this page? Click here to contact us for more information.