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  • Visit your neurologist – there are no extra tests, procedures or treatments involved
  • You will be assigned a unique identification number, this keeps your information anonymous
  • Your de-identified information will be stored securely with all MND registry data.
  • All patient information is combined for analysis to help provide useful data for improving patient care.

Reasons to Participate:

  • You will receive the same high level of care
  • You can actively contribute to research by enabling researchers to learn more about the disease
  • You can make a difference

Information about participating:

  • Your neurologist will complete all the details needed to participate
  • You can withdraw from the MND Registry at any time or decline to participate
  • Choosing not to participate will not affect the quality of care you receive
  • Your neurologist will be the only person to know ‘who you are’
  • Information about you is collected for the registry;
    1. At your first visit
    2. Approximately 3 months after your first visit
    3. Approximately 6 months after your first visit
    4. Approximately 12 months after your first visit
    5. Then approximately every 6 months.