Date: 18 Jul 2023

Strengthening and improving multidisciplinary care for people with Motor Neurone Disease (MND)

Venue: Online via zoom


Event Notes:

Time: 11.00 – 12.30
Aim: To highlight the key clinical messages from the world’s largest study examining the lived experience of people with MND – the TONiC-ALS study, which has 36 sites in the UK.

Objectives: TONiC began by asking people with MND and their clinical teams what needed to be investigated. We have discovered a lot but to learn more about what this webinar will focus on, see the details on our website.

By the end of the session participants will:
• Know several of the key clinical findings, specifically the role of disability, fatigue, anxiety and breathlessness on QoL, and the relationship between pain, anxiety, depression and QoL, as well as the risk factors for social isolation following a diagnosis of MND.
• Be familiar with TONiC PROMs for clinical use: how to score, how to obtain for free, what’s coming next (capacity to bench mark your data against national norms)
For those doing monitoring, research or audit, understand TONiC PROMs for research use: how to use the nomograms to quickly convert your data to interval level so you can do statistical tests like change scores and averages

Speaker: Professor Carolyn A Young, Consultant Neurologist – The Walton Centre