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ALS Quest - a survey looking at risk factors for MND

Map of ALS Quest questionnaire's filled inResearchers at the University of Sydney are conducting a web-based study that is looking for potential risk factors for ALS/MND. The study consists of an online questionnaire, which is filled out by people both with and without ALS/MND. Community members and friends and relatives of ALS patients are encouraged to participate since controls are needed as much as people with ALS/MND. The results are then compared between people with ALS/MND and controls to look for risk factors that underlie the disease.

The ALS Quest questionnaire

The factors asked about include chemical and pesticide exposures, occupational activities, physical activity, smoking, physical trauma, medical conditions, and stress. The study was launched online in January 2015 and is planned to be active for at least another 10 years, to collect the maximum possible number of responses from around the world.

Translation of the questionnaire into different languages

To date, the questionnaire has been translated into 23 languages other than English by volunteer translators. You can see the complete list of languages available at If a language you speak does not appear in this list, and you would like to help translate it to enable those language-speakers to participate in the project, please contact us (see contact details below).

Which countries have responded to the questionnaire?

To date, approximately 1,000 responses to the ALS Quest questionnaire have been collected. The respondents have been from 32 countries. The map below shows where our respondents live, and how many of them are from each country (as a percent of the country’s population, with darker colours indicating a greater percentage of people). Australia has the most respondents relative to its population, thanks largely to the efforts of MND Australia and state MND Associations in promoting the questionnaire. The United States, New Zealand and Canada are also well-represented.

Map showing countries where the survey has been responded to. Australia has had the most respondents per capita.

Early results from the questionnaire

Initial analyses of the questionnaire data have shown interesting results as regards finger lengths, personality type, and the amount of physical activity in ALS/MND. These results will be shared on ALS Quest social media platforms as soon as they are published.

Contact information

Associate Professor Roger Pamphlett (This email address is being protected from spambots. You need JavaScript enabled to view it.)

Study Manager: Jane Parkin Kullmann (This email address is being protected from spambots. You need JavaScript enabled to view it.)

You can follow ALS Quest on Facebook, Twitter and YouTube.

Fill out the questionnaire today! Every response counts.

MND Victoria
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