Take part in research
Research into Parkinson’s continues to be on the rise in Australia and internationally.
Taking part in a research project may result in a better understanding of , or better treatment or a potential cure for Parkinson’s. In some cases, research projects may provide access to new interventions before they are widely available.
Below are current research projects looking for participants
Insights into the experience of pain in Parkinson's Disease
Volunteers with Parkinson’s disease are required for a study looking at pain in people with Parkinson’s disease. The study aims to describe the primary ‘drivers’ (i.e. different characteristics) of the pain experience in people with Parkinson’s disease and ongoing pain. Understanding the magnitude of each pain ‘driver’ will help guide a more individualised approach to pain management and improve quality of life. The study involves completing an anonymous survey about the different ‘drivers’ of pain.
The expected time to complete the survey is 30 – 40 minutes.
To take part in the research you must:
• Be diagnosed with Parkinson’s disease
• Regularly experience significant pain (i.e. > 3/10 pain severity (on a scale from 0 to 10, where 0 is no pain and 10 is extreme pain) on more than 2 days per week in the prior 3 months)
This study is being conducted by a team of researchers from the University of Sydney, led by Dr Natalie Allen. Vanessa Nguy is conducting this study as the basis for the degree of Doctor of Philosophy at the University of Sydney.
The survey can be completed online or you may request a paper copy. If you would like to complete an online survey please go to https://sydney.au1.qualtrics.com/jfe/form/SV_5C4mz821U1RMvKS
If you would like to request a paper survey or have further questions, please contact:
Miss Vanessa Nguy | Ph: 0411673561 | Email: email@example.com
Successful AGEing Yoga Trial
Evaluating Parkinson's Support Groups
What makes and creates effective Parkinson’s support groups for people living in rural and regional areas of New South Wales (NSW)?
This research will explore the models of Parkinson’s support group leadership, what makes and creates an effective Parkinson’s support group from the perspective of people with Parkinson’s disease (PD), caregivers and support group leaders living in rural and regional New South Wales (NSW).
The study seeks to understand Parkinson’s support groups and the members who attend these groups.
Why is this research being done?
The need for support is a central part of living and dealing with the challenges Parkinson’s disease brings to an individual and the caregivers who live with them. This research study aims to explore the models of Parkinson’s support group leadership, and what makes and creates an effective Parkinson’s support group for people living in rural and regional areas of NSW.
Who can participate? If you are over 18 years of age and a person with Parkinson’s, a caregiver or a support group leader that has participated in a Parkinson’s support group within the last six (6) months, Vincent would like to speak with you about your experience.
A person living with Parkinson’s disease can participate in the study with or without their caregiver being involved or present.
What does the study involve? If you are interested in helping with this research, Vincent will contact you and arrange a convenient time to interview you about your experience.
A support person can attend the interview with you if you wish. If you have chosen to attend with a support person your information will not be confidential between you and Vincent as the person attending with you will be privy to the information. You can be assured Vincent will maintain confidentiality and the participant and their supporters will be encouraged to maintain confidentiality but Vincent cannot guarantee it.
Who is the researcher? My name is Vincent Carroll, I am a Doctor of Philosophy (PhD) candidate at Charles Sturt University. I work as a Parkinson’s Clinical Nurse Consultant at the Mid North Coast Local Health District and Parkinson’s NSW.
Interested? For more information please refer to the Participant Information Sheets below as they relate to you or contact Vincent Carroll via telephone 0401595795 or email firstname.lastname@example.org. Read more here
Participant Information Sheets
Parkinson's Disease, Sleep and Melatonin
This study aims to find out whether melatonin can help people with Parkinson’s Disease to get better sleep.
Sleep problems often cause major discomfort in Parkinson’s Disease. The person’s health and quality of life is affected, and so are their family members’, especially if they are also carers.
Melatonin is a hormone which regulates the sleep-wake cycle, by promoting the desire to sleep at night. Studies in other conditions show that melatonin can increase sleep efficiency, decrease night-time awakenings, and help people fall asleep.
To be eligible for this study people must be:
- Aged over 30 years
- Diagnosed with Parkinson’s Disease by a neurologist
- Experiencing sleep difficulties, particularly getting to sleep.
If you are already on melatonin, you can still join the study to find out if it works for you.
This study involves two phases:
- Phase 1 involves answering a questionnaire, and keeping a sleep diary for two weeks.
- Phase 2 involves testing medication effectiveness for 12 weeks. During this period, you will be given both melatonin and a placebo (dummy tablet), in blocks of two weeks each, and in random order. You also need to keep a sleep diary and complete some questionnaires.
Our research has full ethics approval.
Reasons to participate:
- You will find out if melatonin helps you fall asleep, stay asleep and your sleep quality.
- At the end of the study, an individual report about whether the melatonin worked for you will be given to your doctor to discuss with you.
- You will help others by assisting us to find out if melatonin should be used for people with Parkinson’s Disease who are having trouble sleeping
We hope that our research will help patients, families and medical practitioners to find a better treatment for long-term sleeping difficulties among people with Parkinson’s Disease.
- This study can be done online or over the phone in the comfort of your own home
- Information collected will be sleep diary data, questionnaire data about your health, and data from a Motionwatch which monitors your sleep patterns.
- No face-to-face meetings are required. There will be two phone calls to enroll participants (10 mins and 45 mins), then weekly 5 minute calls to monitor progress.
- The study will last 4 weeks (2 + 12). There is a run-in (Phase 1) to find out which dose to test, then a 12 week study (Phase 2).
- All data is de-identified before publication. All data is completely confidential. Your doctor sees a summary of your individual results at the end of your study. Data is stored on the secure University of Queensland server.
Dr Jane Nikles, Principal Research Fellow, The University of Queensland Centre for Clinical Research
Ph: 0408 599 033
For more details visit the study website here
THE INTEGRATE PROGRAM
the Integrate program: a program designed to improve the mobility of people with Parkinson’s
Parkinson’s NSW awarded grants totalling $300,000 to four prominent researchers at the Support Group Conference Annual Dinner in October 2018.
Dr Natalie Allen, Senior Lecturer – Discipline of Physiotherapy, Faculty of Health Sciences at the University of Sydney was awarded one of the $100,000 Parkinson’s NSW research grants and is now recruiting volunteers.
The Integrate program is delivered in participant’s homes by physiotherapists and occupational therapists, and runs for 6 months. It includes three components: behavioural modification, environmental modification and exercise.
You may be eligible to participate if you have Parkinson’s disease and:
- have fallen at least twice in the last 6 months,
- are able to walk at least 10 metres on your own (with or without a walking aid)
- do not have any other neurological problems (eg stroke) or uncontrolled health conditions (eg angina)
This study is being conducted by a team of researchers from the University of Sydney, and Neuroscience Research Australia, led by Dr Natalie Allen. All assessments and intervention will be carried out in participant’s homes.
|Name||Dr Natalie Allen|
|Phone||0468 322 724|
Parkinson's Stepping Study
Neuroscience Research Australia (NeuRA) and The University of New South Wales are looking for volunteers to take part in the Parkinson’s stepping study.
The aim is to improve voluntary and reactive stepping in people with Parkinson’s , all whilst playing enjoyable games in your own home and attending 3 slips and trips training sessions in NeuRA’s lab (Sydney).
It is hoped the stepping training program done at home and at NeuRA will result in reducing fall risk in people living with Parkinson’s.
Who can be part of this research study?
- Diagnosed with Parkinson’s
- Living in metropolitan Sydney
- Willing to commit to the study for 12 weeks
|Phone:||02 9399 1024|