Dear colleague,
TONiC is one of the largest studies on quality of life in disabling neurological conditions ever conducted. As an advocate of patients with Motor Neurone Disease (MND) and a healthcare professional, you have unique insight into the quality of life (QoL) of those under your care. We are asking for less than 5 minutes of your time per week for 8 weeks to improve QoL for your patients and contribute to data which will shape future service provision.
What is TONiC?
TONiC is a large, multicentre study of quality of life (QoL) for people with neurological conditions. It will recruit 500 patients with MND of any subtype and at any stage of the illness. The aim is to identify factors which are important influences on QoL in MND, with particular emphasis on those which clinical services may be able to influence. These factors will be modelled to help us improve the QoL of future patients. The study has been adopted by CLRN and DeNDRoN.
What is the role of the Professionals’ Forum?
The Professionals’ Forum is crucial. For example, we have identified potential factors through interviews and focus groups with patients and will now use input from the Professionals’ Forum to ensure all relevant factors are included in the questionnaire pack and to design the model to be tested.
Who can join?
Any clinician with experience in the care of people with MND, whatever their level of expertise and irrespective of whether or not they are also recruiting for TONiC. You may also forward this e-mail to any UK clinician, but please restrict only to the UK as the model is developed for UK patients.
What would I have to do if I join?
If you do agree to take part in the study, you will first be asked to read an information leaflet and sign an online consent form. We will then e-mail you weekly to complete brief surveys online via computer, smart phone or tablet. We are aware of how busy clinicians are so the time commitment will be less than 5 minutes per week for 8 weeks and study progress can be tracked online. The online surveys may be filled in as they are released, or at any time until the forum has closed.
What happens to my responses? How are they used?
Your results are analysed anonymously and it will never be possible for an outside party to know how you responded.
We will use the professionals’ answers to shortlist factors that professionals think matter and we will also ask your opinion about the model, because our method tests a model which arises from clinical expertise rather than statistical derivation. When we disseminate the tested model, we want it to have face validity to clinicians in the field.
This sounds interesting and worthwhile. How can I be involved?
1) Log into www.tonicstudy.org
2) Please forward this invitation to as many professionals working with MND as you can – doctors, nurses, occupational therapists, physiotherapists, psychologists, speech and language therapists, etc. We need a large sample and a wide range of professionals to increase the value of this research for future patients and professionals
Thank you for your help.
Professor Carolyn Young
On behalf of the TONiC Study,
Walton Centre Foundation Trust
If you have questions or would like more information, please feel free to contact
Nadia Rose by telephone (0151 529 5784/8004)
Or e-mail ( or ).
E-mail Invitation to Professionals
Version 1.0
21.03.2012