Before you sign up to take part in the Tonic survey you need to read and agree to the following information below.

Participant Information Sheet

Quality of Life (QoL) and neurological disease

Thank you for your interest in our research. This leaflet will explain the background behind our research, why we are doing this work, and how you could be involved. Please take time to read the following information carefully. If you are in any way unsure or have any questions, please do not hesitate to ask. Take time to decide whether or not you wish to take part.

Research Background

Neurological conditions are known to affect quality of life in a number of ways. Some factors have been found to be common to several different neurological conditions and others specific to a particular condition.

What is the research about?

We want to understand how living with a neurological condition affects quality of life. Your contributions to the study help us to understand what matters to people with the neurological conditions, and guides us about what is important for quality of life. We hope this will help us to improve our services and care.

Why have I been invited?

We are approaching you as someone who has knowledge of the neurological condition(s) in which we are trying to understand important factors of quality of life.

What does my participation involve?

If you do agree to take part in the study, you will first be requested to approve a web-based consent form.

You will be asked to complete several online surveys on your opinions about quality of life in the neurological condition in question. Each survey will take 5-10 minutes to complete. Your answers are confidential and all results are anonymised so it will not be possible to identify you.

Internet communication

Our email and web systems meet NHS security standards. We cannot guarantee the security of your personal computer or email address. There are no questions containing sensitive information but if you wish us to encrypt our emails to you, please inform us.

What are the benefits of taking part?

This research will not directly benefit you. However, we hope that the information that you give to us will help us to better understand important factors associated with quality of life in neurological conditions and to improve services for patients in the future.

What are the risks of taking part?

We are not aware of a risk.

Can I withdraw from the study?

Yes. You are free to withdraw from the study at any time without stating a reason.

Who is doing the study?

The senior researcher of the study is Professor Carolyn Young from the Walton Centre for Neurology and Neurosurgery.

Who has reviewed the study?

It has been reviewed by an independent NHS Research Ethics Committee and internally by the Walton Centre Research & Development Committee.

Where can I get more information from?

If you have more questions or would like more information, please feel free to contact the TONiC team by telephone (0151 529 5668) or by email (; or Professor Carolyn Young by telephone (0151 529 5667) or by email (

I have read and understood the information above

Before you sign up to take part in the Tonic survey you need to read and agree to the following information below.

Please note you must belong to a professional body and your membership will be asked if you continue to the next step

I understand that I am free to withdraw from the study at anytime
I understand that relevant data collected during the study may be looked at by individuals from the Walton Centre Research Group, from regulatory authorities or from the NHS trust, where it is relevant to my taking part in this research. I give permission for these individuals to have access to this data
I understand that participating in this study involves completing multiple online surveys.
I agree to have reminders of the online survey if necessary
I agree to take part in this study

TONiC is co-ordinated by Professor Carolyn Young and the TONiC team at The Walton Centre NHS Foundation Trust. The following organisations have supported TONiC by contributing funds

mnda - motor neurone disease association
biogen idec
NHS - National Institute for Health Research
Genzyme - A Sanofi Company
The Walton Center - NHS Foundation Trust