Frequently Asked Questions (FAQ)

Q1: Who can participate?

  • Any person living in Australia who has a diagnosis of Motor Neurone Disease (MND), also known as amyotrophic lateral sclerosis (ALS)
  • Any person who cares for a person with MND.

Q2: Do I have to attend an appointment to participate in the study?

  • No. You can participate in the research from your own home or wherever you have access to the internet, through this website.

Q3: Can I take part in this study if I don’t have access to a computer or smart device?

  • Yes. We can accomodate this by arranging to have a trained research officer verbally conduct the questionnaire via telephone with you at an agreed upon time. If this is not suitable, we can provide you with a paper copy of the questionnaire to complete at home and return via post at your earliest convenience.

Q4: What does participation in this research involve?

  • Completing Health Literacy and eHealth Literacy Questionnaires
  • Completing ALS functional rating scale (ALSFRS) (MND participants only)
  • Completing a questionnaire about your role as a carer (MND Carers only)

Q5: How will my personal information be kept confidential?

  • You will not be asked to provide your name, date of birth or any identifying information other than your age range, gender and postcode. All of the questions in the demographics form are optional. You do not need to complete all of the questions. All of the questionnaire responses will be stored in firewalled, password-protected databases at the University of Queensland. When results are published, they are done as aggregated data altogether; no individual results are included.
  • Calvary Health Care Bethlehem, the University of Queensland (UQ), and project staff are bound to undertake this research in accordance with the Australian Privacy Principles 2014, the Australian Code of the Responsible Conduct of Research and NHMRC National Guidelines for the Ethical Conduct of Human Research (2007) update 2018.

Q6: Will I be given the results of the research project?

  • No individual results will be given. A summary of the results of the study will be provided on the MND Association website when they become available, usually about 6 months after the study ends.
  • The overall findings of the study will be published and presented at forums for people living with MND, researchers and health professionals.
  • Progress and the latest news from the study can be viewed via our website.

Q7: Will I get paid?

  • No. There are no costs associated with participating in this research project, nor will you be paid.