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Motor neuron disease (MND) is a life-shortening disorder, in which the nerves needed to activate muscles die. This leads to progressive weakness of the muscles, including those needed for movement of the limbs, chewing, swallowing, and breathing. MND usually leads to death within 2-3 years. There is no cure and treatment is aimed at easing symptoms. Unfortunately, there is a lack of high quality evidence to guide doctors in the treatment of the distressing symptoms of MND. A particularly troublesome and common disease symptom is persistent drooling. Drooling causes breakdown of the skin around the mouth, speech disturbance, disruption of sleep, coughing and a higher risk of choking. Drooling of saliva can also affect a patient’s mental wellbeing, by causing distress, embarrassment and social withdrawal. Another problem is that uncontrolled drooling can prevent individuals from receiving machine-based breathing treatments, the use of which can prolong a good quality of life.

The ProSec 3 study team, based in Sheffield, plan to recruit 500 MND patients from around the UK, recording details of the prevalence and daily impact of saliva problems, treatments received, any side effects experienced and changes in the symptom over time. These data will enable the team to:

Describe how common problems with saliva are in people with MND
Describe how saliva problems are currently treated
Identify which and how often drugs for saliva problems cause side effects
Identify the effectiveness of each treatment for saliva problems
Further develop an existing assessment tool for the severity of saliva problems in MND patients

The findings of this research will help doctors to better manage problems with excessive saliva production in people with MND and improve the quality of life of those patients. It will also verify a system of assessing the severity and progression of saliva problems, enabling the evaluation of potential treatments in future studies.

The Royal Preston Hospital is a study centre, with Professor Chhetri as the local PI.