New Zealand Parkinson’s environment and genes study (NZPEGS)

We are investigating the genetic, environmental exposures, and other lifestyle factors associated with Parkinson’s disease, particularly within a New Zealand context. 

This research will provide a unique insight into local risk factors and possible protective factors and will help create further understanding of the causes of the disease. 

We are recruiting people with Parkinson’s disease from across the entire country. If you know some with Parkinson’s who might be interested in taking part, please forward study information onto them.

Our Control group will be selected from the electoral roll, so if you receive an invitation to participate, we would greatly appreciate you accepting the invitation.

We have designed online questionnaires to collect the data for the study. We appreciate that not everyone will have suitable internet connections, devices (desktop, laptop, or tablet recommended), or computer know-how. If you are interested in taking part but would prefer to do so on paper, please contact us.

What is involved?

You will be asked to provide details about your life through a series of questionnaires. These questionnaires will cover topics such as your residential and occupational history, potential exposures to chemicals and toxins, lifestyle factors, family structure, medical history, mental and physical wellbeing. For people with Parkinson’s, we will also ask about experiences related to living with Parkinson’s such as your symptoms and medications.

You will be asked to provide a saliva sample for the collection of DNA and complete a smell test. 

We will also conduct a video call with you. During this call we will complete some movement assessments and some memory and thinking assessments.

Who can participate?

People living in New Zealand with the following diagnoses are able to participate:

  • Parkinson’s disease
  • Multiple system atrophy (MSA)
  • Progressive supranuclear palsy (PSP)
  • Corticobasal syndrome (CBS)

Unfortunately, we cannot accept anyone that has any other chronic brain condition, including, but not limited to - vascular parkinsonism, drug-induced parkinsonism, prior stroke, multiple sclerosis, or dementia

The Parkinson’s Participant Information Sheet and Consent Form is available online as a PDF.

Note: The Consent form will be completed and eSigned online.

Control Participants

The Control Participant Information Sheet and Consent Form is available online as a PDF.

Control participants need to be free of brain conditions as listed below:

  • Any form of dementia (Alzheimer’s disease, frontotemporal dementia, vascular dementia)
  • Any form of parkinsonism (e.g. Parkinson’s disease, multiple system atrophy, progressive supranuclear palsy, corticobasal syndrome, medication-induced parkinsonism (generally through the use of antipsychotic medications), or vascular parkinsonism)
  • Multiple sclerosis
  • Motor neurone disease
  • Epilepsy
  • Essential tremor
  • Stroke
  • Ataxia (reduced muscle control)
  • Dystonia (involuntary muscle activity causing repetitive or twisting movements)

To start the survey

Contact

If you have any questions or would like more information, please contact us 

Email: pegs@nzbri.org 
Phone: 0800 119 814

This study has been approved by the Southern Health and Disability Ethics Committee, reference number: 2022 EXP 11833