- 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;
- At your first visit
- Approximately 3 months after your first visit
- Approximately 6 months after your first visit
- Approximately 12 months after your first visit
- Then approximately every 6 months.