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Spotlight on Research: The ALS Quest

ALS Quest is an international online questionnaire that was developed in 2013, and to date more than 1,100 responses have been collected from ALS/MND patients and controls, including many from Australia. The goal of the questionnaire is to look for novel environmental and lifestyle factors that might contribute to the development of the disease.
 
The ALS Quest researchers, Jane Parkin Kullmann, Susan Hayes and Roger Pamphlett, recently published two papers. The first is on the personality of ALS/MND patients, where we explored the question of whether ALS/MND patients could be characterized as “nice,” and found that ALS/MND patients do indeed exhibit personality characteristics that could be perceived as being nicer than average, such as having higher agreeableness, higher conscientiousness, and higher extraversion https://onlinelibrary.wiley.com/doi/10.1002/brb3.1119. The personality traits of ALS/MND patients may also provide clues as to why certain risk factors are related to ALS; for example, higher extraversion might be associated with a greater likelihood of smoking.
 
The topic of the second paper is stress as a potential risk factor for the disease. Interestingly, stress (based on the occurrence of stressful life events and occupational stress) was not shown to be a risk factor https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0204424.
On the contrary, ALS/MND patients were more resilient than others, suggesting a better response to stress. Resilience is partially an inherited characteristic, raising the possibility of a link between genes for resilience and ALS/MND.
 
This research would not have been possible without the considerable support of MND Australia and the state MND Associations, who publicise the questionnaire and assist with translations of the questionnaire. The ALS Quest questionnaire is still active, and responses are being collected for future analyses. ALS/MND patients, as well as people without ALS/MND are encouraged to fill out the questionnaire at www.alsquest.org.
 

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