MND research: answering your key questions and driving change

Building a clearer picture of motor neurone disease (MND) to improve care and drive change

Research is essential for improving the lives of people with motor neurone disease (MND) and their families. It helps us understand what works, what doesn’t, and where change is needed to provide better care, services, and support. That’s why Motor Neurone Disease NZ is committed to ensuring that research continues to be a priority—not just for clinicians and scientists but for everyone affected by this disease.

The MND Insight Survey is the most comprehensive study of its kind in New Zealand, designed to answer the critical questions about what’s working, what’s not, and where improvements are needed.

The survey is led by Dr. Natalie Gauld, who was diagnosed with MND in 2022 and supported by Motor Neurone Disease NZ. This research will provide invaluable data on the experiences of people with MND, their families, and their carers. Your participation will help drive better access to services, inform funding decisions, and ensure that people affected by MND receive the support they need.

What is research, and why is it important?

Research is the systematic study of a subject to discover or confirm facts, gain new insights, and find solutions to problems. In the case of MND, research can take many forms:

• Medical research focuses on understanding the causes of MND, potential treatments, and, ultimately, a cure.
• Clinical research looks at the effectiveness of different care approaches and medical interventions.
• Advocacy research (like the MND Insight Survey) identifies challenges people with MND face, what’s working well, and where improvements are needed in health and support services.

By participating in or supporting research, people with MND and their families play a vital role in shaping future care, influencing health policies, and improving access to services.

The MND Insight Survey: capturing lived experiences

Right now, MND NZ is leading its most in-depth survey ever undertaken in Aotearoa. The MND Insight Survey aims to build a comprehensive picture of what life is like for those living with MND and their carers. The findings will help us:

• Advocate for better services by highlighting unmet needs
• Inform health professionals to improve care and support.
• Strengthen funding applications with real-world evidence.
• Encourage further research into areas that matter most to people with MND.

This survey is being conducted at an academic level, ensuring credibility and robustness. It has been shaped by people with MND, their carers, and leading health experts to ensure it truly reflects the community's needs.

Frequently Asked Questions (FAQs)

1. Why is this survey important?

The MND Insight Survey 2025 is the most in-depth study of motor neurone disease (MND) ever conducted in New Zealand. It will help us understand the experiences of people living with MND and their whānau, identify gaps in services, and advocate for better healthcare, support, and funding.

2. Who is leading this research?

The survey is led by Dr. Natalie Gauld, Research Advisor and Best Practice Advocate at MND NZ. It is funded by the Health Research Council of New Zealand (HRC) and supported by Motor Neurone Disease NZ.

3. Who can take part in the MND Insight Survey?

There are three versions of the survey:

• People living with MND (16 years and older, living in NZ).
• Family/whānau carers of someone with MND who is still alive.
• Family/whānau carers of someone who has passed away from MND within the last two years.

4. How can I participate?

The survey can be completed online, on paper, or over the phone (the phone option is for people with MND only). Support Advisors can assist if needed.

5. Can I request a paper copy?

Yes. You can request a printed survey to be mailed to you. Contact your MND NZ Support Advisor to arrange this.

6. Can I take part if I live outside New Zealand?

No, this survey is only for people with MND and family carers living in Aotearoa New Zealand.

7. Can multiple family members complete the survey?

Yes. We encourage participation from one or two of the main family/whānau carers to ensure we capture key experiences.

8. Can I complete the survey in multiple sittings?

Yes. If you are completing the survey online, your progress will save automatically when you click the “Next” button at the bottom of the page. If you need to stop, you can return later to finish.

9. How long does the survey take?

• The patient survey takes around 1-2 hours (it can be done in sections).
• The family/whānau carer surveys take about 30 minutes.

10. What will happen to my responses?

Your responses are completely confidential and anonymous. The data will be used to generate a report and research papers that will inform advocacy, healthcare services, and further research. No identifiable information will be shared.

11. Will the findings be shared publicly?

Yes. A summary of key findings will be shared on the MND NZ website, in MND NZ newsletters, and through healthcare and advocacy networks. Participants can also opt-in to receive updates when completing the survey.

12. Why is my participation important?

By sharing your experiences, you help MND NZ:

• Advocate for better healthcare and services.
• Provide evidence for funding applications.
• Identify areas where research and policy changes are needed.

13. When does the survey close?

The survey will be open for four weeks (possibly extended to six weeks if needed).

14. Will I receive updates on the findings?

Yes. A summary of the results will be shared with participants, the MND community, and healthcare professionals. The findings will also be available on the MND NZ website.

15. Is there an incentive for participating?

Yes! Participants can enter a prize draw for supermarket vouchers:

• People with MND: 3 x $100 vouchers.
• Family/whānau carers: 3 x $50 vouchers across the two surveys.

16. I have MND but struggle with technology—can I still take part?

Yes! You can complete the survey on paper or over the phone if using a computer is difficult. Support Advisors can also assist with the process.

17. How will the results be used?

The data collected will:

• Help advocate for better MND services and funding.
• Be shared with healthcare professionals to improve MND care.
• Provide insights for further research into MND.
• Identify areas where policy changes are needed.

18. What if I don’t feel comfortable answering certain questions?

You do not have to answer any question you are uncomfortable with. There are a few essential questions (such as diagnosis year and region), but most are optional.

19. How is my information protected?

• All data is stored securely and will only be accessed by the research team.
• No individual responses will be shared—only aggregated findings will be reported.
• The study has been approved by a Health and Disability Ethics Committee (HDEC).

20. Will my responses be linked to my healthcare providers?

No. Your answers are not connected to your medical records or shared with any healthcare provider.

21. Can I withdraw my responses after submitting the survey?

Because the survey is anonymous, we cannot identify individual responses to remove them. If you are unsure, we recommend only submitting your survey when you feel ready.

22. When will the results be published?

We expect to share initial findings in mid-2025.

23. How can I help spread the word?

You can encourage others in the MND community to take part by:

• Sharing this information with others living with MND.
• Posting about the survey on social media.
• Encouraging family and friends to participate.

Important: Please read before starting the survey

Before you begin the MND Insight Survey, you must read the Participant Information Sheet (PIS). This is a requirement from the ethics committee to ensure you fully understand the purpose of the survey, how your data will be used, and your rights as a participant.

The Participant Information Sheet provides details on:

• Why this survey is important and how it will help improve advocacy, healthcare, and support for people with MND.
  What participation involves and how you can complete the survey.
• How your responses will remain confidential and be used for research purposes only.
• Your rights – including that participation is voluntary and you can choose which questions to answer.
• Proceeding with the survey, you confirm that you have read the Participant Information Sheet and agree to participate.
• Survey links can be found on the last page of this document.

Together, we can make a difference

Research is more than data—it’s about people. It’s about ensuring that every person with MND in New Zealand receives the best possible care, has access to the right support, and, ultimately, moves closer to finding treatments and a cure.

If you or someone you know is affected by MND, consider taking part in the MND Insight Survey. Your voice matters, and your experience can help shape a better future for the entire MND community.