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Registry Consent Form

We encourage everyone with MND to be on the MND registry so we can get the best understanding possible of MND in New Zealand and increase research on MND in New Zealand. Read about the Registry by downloading the patient information sheet or by visiting mnd.org.nz/research/mnd-registry.

Please indicate you consent to the following*
- I have read, or have had read to me, and I understand the Participant Information Sheet.
- I have been given sufficient time to consider whether or not to participate in this registry.
- I have had the opportunity to use a legal representative, whanau/ family support or a friend to help me ask questions and understand the registry.
- I am satisfied with the answers I have been given regarding the registry
- I understand that taking part in this registry is voluntary (my choice) and that I may withdraw from the registry at any time without this affecting my medical care.
- I consent to the research staff collecting and storing and sharing my information, in the manner described above, including information about my health from my medical records held by my GP and the hospital system.
- Where relevant I specifically give permission to collection regarding genetic tests that I have had
- I agree to an approved auditor appointed by the New Zealand Health and Disability Ethic Committees, or any relevant regulatory authority or their approved representative reviewing my relevant medical records for the sole purpose of checking the accuracy of the information recorded for the registry.
- I understand that my participation in this registry is confidential and that no material, which could identify me personally, will be used in any reports on this registry.
- I know who to contact if I have any questions about the registry in general.
- I understand my responsibilities as a registry participant.
If I decide to withdraw from the registry, I agree that the information collected about me up to the point when I withdraw may continue to be processed.*
- Yes
- No
I would like my GP to be informed of my participation in this registry.*
- Yes
- No
Declaration by participant
Consent*
- I hereby consent to take part in this registry.
Signature*
Use your mouse or finger
Participant Name
First Last
Participant Email*
Participant Phone*
Today's Date*
DD slash MM slash YYYY
Are a representative for the participant and have completed this consent form on their behalf?
Please give your details below.
- Yes
- No
Representative Name
First Last
Representative Email
Representative Phone
Relationship to the participant
Please specify
Participant's Contact Details
I am:*
- The participant
- The participant’s representative
Participant's personal details:
Name*
First Middle Surname
Date of Birth*
DD slash MM slash YYYY
Sex:
- Male
- Female
Ethnicity (select as many as required)*
- NZ European
- Maori
- Cook Island Maori
- Tongan
- Niuean
- Chinese
- Indian
- Other
Ethnicity - Other
Address*
Street Address City Region ZIP / Postal Code Country
Email*
Home Phone*
Mobile Phone
NHI Number (if known)
GP Name*
GP Practice Name
Please choose one of the following:*
- I have been diagnosed with MND
- I have a family member with MND
- I have had a positive genetic test for an MND related gene, but have not been diagnosed
- Other
Please choose one of the following - Other Option
Do you see a neurologist or other specialist privately or publicly?
- Privately
- Publicly
Type of specialist seen:
Name of specialist or location of neurology department:
How did you hear about the NZ MND Registry?
- From my neurologist
- From my MND NZ Support Worker
- From information MND NZ supplied
- Other
How did you hear about the NZ MND Registry? - Other Option
Are you also a client of the Motor Neurone Disease NZ support and advisory service?*
- Yes
- No
If you are the participant’s representative and completing this form on their behalf, please provide your full details:
Name*
First Last
Email*
Phone
Relationship to participant:*

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Auckland 1345, New Zealand

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