The TONiC study is looking at factors that influence quality of life, and is inviting people living with MND to take part in the next phase of the project.
What is TONiC?
Part-funded by the Association, the Trajectories of Outcome in Neurological Conditions (TONiC) study is the largest study of its kind in the world. The study aims to examine factors that influence quality of life in patients with neurological conditions, including MND.
TONiC will hopefully have a significant and positive impact on the lives of all patients living with neurological conditions, regardless of symptoms, stage of illness, age or social status.
We are now funding Prof Carolyn Young, based at the Walton Centre in Liverpool, to continue on this essential healthcare project, and take it to the next level. This means she needs to recruit a large number of people living with MND, to take part to help establish a ‘tool kit’ for quality of life in MND.
Why is it important?
During MND clinic visits, neurologists use a physical tool kit to look at factors that have a physical impact on people living with MND, such as assessing breathing and muscle strength. However, there is currently no standardised kit for assessing quality of life in MND, and TONiC aims to change this.
The researchers hope that by recruiting more people living with MND to take part they can use the results from TONiC to create a national quality of life tool-kit, to be used alongside the physical measurements, for assessing quality of life in the MND clinic.
Interview with Prof Young
Prof Young said: “Around the world, attention is being paid to TONiC and what it will mean for MND care. So far, we are extremely grateful for the more than 200 people with MND who have already completed and sent back the questionnaire pack, so we can start analysis.
“We have begun by testing some of the standard research measures, and so far we have identified that standard ways of measuring ability to cope, and hope, do not work well in MND. I guess this is not surprising as MND may be in a different league to situations people have experienced before.
“The wonderful contribution of MND patients completing the long pack means that we will publish better measures for coping and hope and make them available for researchers all over the world. We can also make the pack shorter as the new measures are more focused than the generic ones.
“The list of benefits that are coming through from TONiC is long and space prevents me from covering other measures, health economics data (which will be vital to have new treatments funded), and exciting work on looking at different forms of MND.
“However, there are two points to stress, firstly we still want more people living with MND to come forward and complete one questionnaire pack with multi-choice tick box answers at home before returning it to us. Any person with MND living in the UK who could help with that is welcome to take part. If you would like more information, please contact your closest TONiC centre or the TONiC team direct (details below).
“Secondly, if you complete this pack within 12 months of being diagnosed with MND, we are really interested to keep in touch with you by post, email and phone and see how things change for you over time. By collecting a detailed picture of how people are doing every few months, we can gain so much insight in how to help people with MND now and in the future.
“So please join us in TONiC, and I look forward to updating you about progress again soon.”
How do I take part?
The large-scale extension to the TONiC study is now being rolled out into specialist neurological centres in cities throughout the UK and is inviting people living with MND to take part. Participants will need to consent to take part in the study before they complete a questionnaire pack of mainly ‘tick-box’ type questions.
The TONiC team consists of two Clinical Trial Support Officers, Andrea and Nicole. They would be happy to speak to anyone who is thinking of taking part in the study, as well as signposting them to their local TONiC champion: “Our role involves managing and supporting the set-up of current and new sites involved in TONiC. We also provide information regarding TONiC to patients who express an interest in taking part.”
Visit our website www.mndassociation.org/tonic or telephone 0151 529 5446/5666 to contact the TONiC team.