Enhanced Advance Care Planning and life Review Longitudinal Intervention (EARLI) Project

Jointly conducted by the School of Psychology at the University of New South Wales and Neuroscience Research Australia (NeuRA).

What it is:

This research project is investigating whether telling life stories and conducting advance care planning can help people.

Who can participate:

You can participate if you are:

• Aged 45 years or older and have a diagnosis of a progressive neurological condition such as Parkinson’s
• Living in a private residence in New South Wales (e.g. a home or shared accommodation, but not in a residential aged care facility)
• Are capable of providing informed consent and completing survey questions.

The research team will ask you some preliminary questions to determine if you are eligible for the study.

Interviews can be conducted in English, Italian, Mandarin or Cantonese.

What participation involves:

Telling life stories involves participating in interviews to share memories verbally, telling stories in some form, or sharing photos. Advance care planning means thinking and talking about what is important for you in your future care.

How to participate:

Request a form to be sent via email from:

John Back

Communications Manager

Parkinson’s NSW

E: john.back@parkinsonsnsw.org.au

For more information:

Contact the study’s Chief Investigator:

Dr Craig Sinclair

Senior Research Fellow, University of New South Wales

T: (02) 9399 1095

E: c.sinclair@unsw.edu.au

Improving the identification of cognitive disorders such as dementia and mild cognitive impairment in individuals with Parkinson’s disease

Study being conducted by the Dementia and Neuro Mental Health Research Unit,UQ Centre for Clinical Research, The University of Queensland

What it is:

Research aimed at improving the identification of cognitive disorders such as dementia and mild cognitive impairment in individuals with Parkinson’s disease.

Who can participate:

Individuals living with Parkinson’s and their care partners.

Volunteers who do not have Parkinson’s who:

• Are male or female
• 45 years of age or older
• Have no family history or diagnosis of Parkinson’s disease
• Reside in Australia at the time of participation

What participation involves:

Completing a 15-to-20-minute online survey based on a set of recommendations developed through focus groups addressing cognitive disorders in Parkinson’s. The survey asks participants to rate their agreement and provide any additional input they may have.

How to participate:

The survey is open until Sunday, November 17, 2024, and can be accessed through the following link: https://redcap.link/r1prp1jl

For more information:

Email Deepa Sriram PhD

PDCogniCare Team

Dementia and Neuro Mental Health Research Unit

UQ Centre for Clinical Research

E: pdcognicare@uq.edu.au

Randomised Controlled Trial of Sodium Selenate as a Disease Modifying Treatment for Probable Progressive Supranuclear Palsy

What it is:

This study will investigate a new drug, sodium selenate, for the treatment of progressive supranuclear palsy (PSP). Up to 70 patients with PSP will be recruited in to the study. Half of the patients will receive 52 weeks of treatment with sodium selenate (15 mg three times a day), and the other half a placebo (a sugar pill).

The main outcome of the study will be the change in volume of specific brain regions over 52 weeks, comparing the treatment group to the placebo group. Additional outcomes will look at the overall safety and tolerability of the treatment, the change in mean diffusivity (a measure of neurodegeneration) on MRI, and the rate of disease progression observed in patients over the 52 weeks of treatment.

Who can participate: 

1. Male or female (aged 40 years or over).
   2. Subjects must have a formal diagnosis of Probable PSP
2. Subjects must be able to walk a minimum of 5 steps with minimal assistance (walker allowed).

What participation involves:

1. Subjects will be required to have a lumbar puncture performed.
   2. Subjects will be required to have an MRI scan during the screening period. It should show no gross structural abnormality indicative of a neurological disorder other than PSP.
   3. Subjects must be living in the community and have at least 10 contact hours per week with a responsible carer. The carer should be capable of ensuring the subject’s compliance with the medication, be prepared to attend with the subject for assessment and be willing to participate in completing the various assessments throughout the period of the subject’s involvement in the Study.

How to participate:

NSW hospitals participating in this study are Macquarie University and St. Vincent’s Hospital Sydney. Assessments at one of these hospitals will be required.

To enrol for the study, contact:

Sara MacPhail

Research Assistant

Department of Neuroscience

Monash University

T: (03) 9903 0121

E: selenate@alfred.org.au

For more information:

Lucy Vivash

T: (03) 9903 0860

E: lucy.vivash@monash.edu

Australian Parkinson’s Pain Study (APPS)
University of South Australia

What it is:

An investigation of the characteristics of pain in Parkinson’s. This will enable the researchers to develop a comprehensive profile of Parkinson’s-related pain, a deeper understanding of the needs of people living with pain due to Parkinson’s, and patient-centred recommendations on the provision of pain care services.

Who can participate:

People who have been diagnosed with Parkinson’s and have experienced pain symptoms in the past month.

What participation involves:

Completing an online survey.

How to participate:

Visit: www.australianparkinsonspainstudy.com.au

For more information:

Email Anthony Mezzini at anthony.mezzini@mymail.unisa.edu.au

This research study investigates when and why people with Parkinson’s disease are referred to allied health. We will be looking at the journey of people with Parkinson’s disease from the time of their diagnosis to the present.

Who can take part in this study: People living with Parkinson’s disease and where appropriate, their care partners.

This study will involve:
• Filling in a questionnaire about your Parkinson’s disease
• Participating in 2 interviews
• Completing a Parkinson’s disease diary in between interview sessions

This study is being conducted by a team of researchers from the University of Sydney as part of the basis of Ms Cassandra Wong’s Doctor of Philosophy (Medicine and Health) studies, supervised by Dr Serene Paul.

To take part in this study, click this link: https://sydney.au1.qualtrics.com/jfe/form/SV_by1rmxDybOFPAKa

If you would like to be involved or would like further information, please contact:
Ms Cassandra Wong
Phone: (02) 9351 9143
Email: cassandra.m.wong@sydney.edu.au

Dr Serene Paul
Email: serene.paul@sydney.edu.au

HREC Approval No.: 2022/892

Download flyer

About the study
The Australian Parkinson’s Genetics Study (APGS) is a nationwide research study run by the QIMR Berghofer Medical Research Institute in Brisbane and funded by the Shake It Up Australia Foundation (SIUAF) and The Michael J. Fox Foundation (MJFF).

Study Aim
APGS aims to recruit thousands of participants with Parkinson’s disease to help scientists crack the code of Parkinson’s disease. Better understanding the genetic basis of Parkinson’s is essential to accelerate the discovery of new drug therapies to prevent, slow, stop and cure Parkinson’s Disease.

Purpose of the study
A person’s risk of Parkinson’s disease (PD) has a hereditary component. Understanding how genes are implicated in the disease process can provide insights into the molecular mechanisms leading to Parkinson’s onset and progression and highlight new therapeutic targets for more effective treatments.

The Global Parkinson’s Genetics Program (GP2) is an ambitious program to study the genetics of >150,000 volunteers worldwide to understand the genetic risk factors of PD further. There is still much to learn about PD, and the path to further understanding requires the participation of hundreds of scientists and clinicians and thousands of patients from all backgrounds. More information about GP2 is available at
https://gp2.org/

Who is running the study
QIMR Berghofer is a world-leading medical research institute, renowned for our efforts in both discovery and translational (real patient setting) research. We research cancer, mental health, infectious diseases, and chronic disorders. We are a passionate and dedicated team of almost 900 researchers, scientists, students, and support staff based in Brisbane. Our scientists are creating The Future of Health by discovering more effective ways to prevent, diagnose and treat diseases.

Who can participant 

Volunteers must be:

• Male or female
• Any age
• Have been diagnosed with and treated for Parkinson’s disease
• Residing in Australia at the time of participation

What does participation involve

Participation is easy and can be done from the comfort of your home. It involves a ~25 minutes online (or paper-based) questionnaire and providing a saliva sample via traditional post.

The online questionnaire will ask information such as your contact details and questions about your experience with the disease, family history, medical history, lifestyle, and environmental risk factors.

After completing the online survey, participants may be asked to donate a saliva sample, from which researchers can extract their DNA to identify specific genes associated with Parkinson’s disease. Researchers will send a saliva collection kit together with a pre-paid return envelope to selected participants.

Paper-based questionnaires are available. You can contact us to have a paper questionnaire sent to you by traditional mail. You can request this by calling 1800 257 179, writing an email to pd.genetics@qimrberghofer.edu.au or sending a letter to the following address:

Richard Parker – APGS Project Coordinator
Locked Bag 2000
Royal Brisbane Hospital
Herston, QLD, 4029
AUSTRALIA

Researchers
This study is being conducted by the following researchers at QIMR Berghofer:
• Professor Nicholas G. Martin
• Dr Miguel E. Renteria
• Professor Sarah E. Medland
• Dr Penelope Lind
• Dr. Philip E. Mosley

Contact
Free call number 1800 257 179.
Email: pd.genetics@qimrberghofer.edu.au 

Further information
Visit the website for more information Australian Parkinson’s Genetics Study – QIMR Berghofer

A copy of the participant information sheet can be found here

You can learn more through checking the fact sheet here

You can find answers to Frequently Asked Questions about the study here

Project Title
A questionnaire investigating access barriers to speech pathology services for people with Parkinson’s disease in rural and regional New South Wales

Project Aim
The aims of this questionnaire are to determine what speech pathology services are available to people with Parkinson’s disease (PWPD) in rural and regional NSW, the potential barriers PWPD face when living in rural and regional NSW when accessing speech pathology services, and the effects of these barriers on the quality of life (QoL) for PWPD. This study aims to investigate the link between accessibility to speech pathology services and health outcomes for people with Parkinson’s disease in rural and regional NSW as compared to other healthcare services. With this survey, we plan to get insight into your speech pathology needs, what services are available, barriers you face when accessing these services, and what effects those barriers have on your quality of life.

Benefits of the Project
This research will allow us to learn more about how accessibility to speech pathology services, or lack thereof, impacts PWPD in rural and regional NSW. Not only in health outcomes, but also in overall quality of life. It may lead to future research into the accessibility of services, as well as shape policy decisions for additional services, funding, and facilities available to people with Parkinson’s disease in rural and regional NSW. It can also help advocate for further funding and training for speech pathologists treating the speech problems associated with PD in these communities.

General Outline of the Project
The project will involve participants completing an anonymous electronic questionnaire containing questions about demographics, Parkinson’s disease diagnosis, quality of life, health and speech pathology service availability, and health and speech pathology service satisfaction.

Participant Involvement
Participants who agree to participate in the research will be asked to:
1. Read the participant information provided at the start of the questionnaire.
2. Tick a box at the start of the questionnaire indicating your consent.
3. Complete and submit a questionnaire.
4. Participants can choose to include their email address in order to ‘opt in’ to receiving feedback post-project.
Email addresses will be collected on a final page of the survey and separated from the main questionnaire data in order to retain your anonymity.
Participation in the research is completely voluntary and participants may, without any penalty, decline to take part or withdraw at any time without providing an explanation or refuse to answer a question.

Survey will be open on 16 May 2022 and will be available for four weeks

Click here to take part in this survey

Researcher
Elizabeth Brown
Faculty of Health, Master of Speech Pathology
0467 898 322
u3225866@uni.canberra.edu.au

Supervisor
Helen Southwood
+61 2 62068420
Helen.Southwood@canberra.edu.au

A collaborative project between the research teams at University of Western Australia and The University of Notre Dame Australia are investigating the non-motor symptoms of Parkinson’s.

The research team have been working in the Parkinson’s space for 5 years and invite people living with Parkinson’s to participate in an anonymous online survey (2020/ET000196). This survey will take approximately 30-45 minutes to complete.

For more information view the flyer

The survey can be accessed by clicking this link 

Contact details:
Madison Hoes
madison.hoes@research.uwa.edu.au

Associate Professor Ryan Anderton
ryan.anderton@nd.edu.au

Integrate: A tailored and multifactorial program for safe mobility in people with Parkinson’s disease

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.

Volunteers with Parkinson’s disease (and where appropriate, their care-partners), are needed for a study investigating the effectiveness of the Integrate program: a program designed to improve the mobility of people with Parkinson’s disease. The aim of the study is to compare the effects of the Integrate program to usual care.

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.
Dr Natalie Allen, Senior Lecturer – Discipline of Physiotherapy, Faculty of Health Sciences at the University of Sydney

Download the flyer

Contact information:

Name: Dr Natalie Allen

Phone: 0468 322 724

Email: natalie.allen@sydney.edu.au

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

Download the flyer

Contact information:

Name: Paulo Pelicioni

Email: p.pelicioni@neura.edu.au

Phone: 02 9399 1024

Website: www.neura.edu.au

Find out more

Researchers at University of Queensland’s Centre for Clinical Research are working to improve neuropsychological assessments for earlier and more effective diagnosis of dementia in Parkinson’s disease. In the first stage of the research they are aiming to engage people as many people as possible with Parkinson’s and their family members across Australia to gain their views and experiences of cognitive assessments and diagnosis of Parkinsons disease dementia.

The project will consist of different forms of participation to choose from such as focus groups over zoom, questionnaires completed online or delphi surveys over zoom.

We are looking for people with Parkinson’s disease or their family care partners, who have undergone a neuropsychological or cognitive assessment, regardless of what the outcome was.

To take part you must be:

• Aged over 18 years
• Able to communicate in English sufficiently for the provision of consent and participate in the research activities
• Have a diagnosis of Parkinson’s disease and have undergone a neuropsychological evaluation related to this condition or are a family member or carer of someone with a diagnosis of Parkinson’s disease who has undergone a neuropsychological evaluation.

If you would like to take part in the research or if you would like to discuss the research please find further details here: https://clinical-research.centre.uq.edu.au/pdcognicare

(This study has ethical approval from Metro HREC (HREC/2023/MNHA/100098) and is funded by an NHMRC MRFF grant #2023746)