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Research Priorities in Parkinson’s disease

A 2019/2020 Summer Studentship research project

This research will give people living with Parkinson’s and their families the chance to express their views on the most important Parkinson’s-related research topics and potentially influence the direction of future Parkinson’s-related research in New Zealand.

Student: Joshua Wensley
Supervisors: Dr Toni Pitcher, Dr Michael MacAskill, Professor Marie Crowe, Professor Tim Anderson
Sponsor: Canterbury Medical Research Foundation

Introduction

Parkinson’s disease is the second most common neurodegenerative disease. Our epidemiological research estimates that ~11,0001 New Zealanders are living with the disease and this number is expected to reach 20,000 by 20402. Parkinson’s is characterized by resting tremor, slowed movement, stiff muscles, and balance and walking problems. In addition to these motor deficits there are a number of non-motor symptoms affecting a wide range of body systems (e.g. gastrointestinal, urogenital, and neuropsychiatric)3. For many with the disease the non-motor symptoms can have greater impacts on quality of life than the motor symptoms4. There is no way of stopping or slowing the progression of the disease. The available treatments provide symptomatic relief only and are primarily targeted at the motor deficits.

Most Parkinson’s-related research is researcher-driven, often with little consideration to what is important to those living with Parkinson’s and their support networks.

Aim

Establish the research priorities of the New Zealand Parkinson’s community, including those living with Parkinson’s, their spouses, family members and friends, as well as clinicians and researchers.

Method

We will survey four groups;

  1. people with Parkinson’s
  2. spouses, family members, and friends of people with Parkinson’s
  3. clinicians and allied health care workers involved in the care of people with Parkinson’s
  4. researchers involved in neurology and neuroscience focused research

The surveys will contain both free text and guided questions and canvas views on the aspect of the disease that has the most impact on a person’s life, the specific symptoms research should focus on and the importance of different types of research. We will also ask about the level of engagement with research and willingness to participate in research. We will also conduct an audit of funded Parkinson’s-related projects in the past five years in New Zealand, allowing us to give an a overview of the research topics that have been addressed in recent time.


Student researcher’s component of the study

The student will be involved in the analysis of the survey results and funding audit. This will involve both quantitative and qualitative research analysis methods. The student will be expected to use R (statistical software) to provide summary data from the surveys ready for presentation. They will also contribute to the writing of the report and manuscript that will arise from this research.

References

  1. https://www.nzbri.org/Labs/parkinsons/Epidemiology/
  2. Myall DJ, Pitcher TL, Pearson JF, Dalrymple-Alford JC, Anderson TJ, MacAskill MR. Parkinson's in the oldest old: Impact on estimates of future disease burden. Parkinsonism & Related Disorder,. 2017, 42:78-84. doi: 10.1016/j.parkreldis.2017.06.018.
  3. Beitz JM. Parkinson’s disease: a review. Frontiers in Bioscience (Scholar edition), 2014, 6:65-74.
  4. Hinnell C, Chaudhuri KR. The effect of non-motor symptoms on quality of life in Parkinson’s disease. European Neurological Review, 2009;4(2):29-33. doi: http://doi.org/10.17925/ENR.2009.04.02.29