Consumer and Community Involvement Program
Researchers are inviting 12 people, or their carers with a lived experience of being admitted to and discharged from a hospital in Western Australia, to assist them to create scenarios for a new healthcare training simulator for students and staff.
They are particularly interested in talking with people and carers with lived experiences of traumatic brain injury (also called ‘head injury’), Parkinson’s disease, stroke and chronic obstructive pulmonary disease (COPD).
To apply: https://bit.ly/PharmSim
Applications Close: Friday March 5
Curtin University Parkinson’s Western Australia Synapse – Australia’s Brain Injury Organisation Carers WA Fight Stroke Australia Stroke Foundation of Western Australia Lung Foundation Australia
#BrainInjury #brainhealth #traumaticbraininjury #traumaticbraininjuryawareness #headinjuries
Heat Sensitivity Study
There are two aims for this study:
- To increase knowledge and understanding of how people with Parkinson’s disease experience the heat.
- To develop a scale for the assessment of heat sensitivity in people with Parkinson’s disease.
These findings will help to shed light on the experience of heat sensitivity in people with Parkinson’s disease and provide a tool for clinicians and researchers to assess heat sensitivity in people with Parkinson’s disease.
If you have been diagnosed with Parkinson’s, you are invited to participate in this research project.
If you are interested in participating in this study, please follow this link to the study site:
Alternatively, for details of the next step, please contact:
Dr Andrew Hunt firstname.lastname@example.org
Prof Ian Stewart email@example.com +61 7 3138 6118
Prof Graham Kerr firstname.lastname@example.org +61 7 3138 6303
Sleep & Parkinson’s
A group of researchers from The University of Queensland are looking for participants for a study into Sleep and Parkinson’s. The focus of the study is the effectiveness of melatonin on improving sleep quality in the Parkinson’s population.
The trial is non-invasive as it is based on questionnaires, sleep diaries and information collected from a watch participants wear. The study runs for approximately 14 weeks. On completion the participants receive an individual report of their response to the trial, which is not usually given in other trials. This study can be conducted from the participant’s home without any intrusion.
For study brochure, please click here: https://www.parkinsonswa.org.au/cwsd.php?Z3AuPTQ3Ng/NDA/VEE-fGhgY3UjcHd7bm8hVWF6a2xjajh1dnI.pdf
For further details please visit the website:
Keen Sense of Smell Leads to First Test for Parkinson’s
Earlier diagnosis of Parkinson’s before physical symptoms appear is becoming a reality, with latest clinical trials looking at smell as a possible indicator of Parkinson’s.
Please click here to read article published in leapsmag: https://leapsmag.com/her-incredible-sense-of-smell-led-scientists-to-develop-the-worlds-first-test-for-parkinsons/
Covid-19 Well-being Study
Covid-19 has changed our lives in many recognized ways and there may be many more of which we are not fully aware. Researchers at Edith Cowan University (ECU) are interested in exploring just how deeply we may be affected. A current project, the takes the form of a short survey which is aimed at the general population, however they are very keen to hear from people with neurological conditions. Part of the focus is on sleep health and we all know that people with Parkinson’s may have problems in this area.
This study has been passed by the ECU Human Research Ethics Committee and is anonymous. The questions focus on demographic information ( age, gender and employment status), how much exposure you are having to Covid- 19 information, concerns about Covid-19 and two sections on sleep quality and general emotional well-being.
Hopefully we will never be in another pandemic situation such as we find ourselves in the present time BUT any information gathered during this time may help us prepare for the future.
The link to the study is: https://tinyurl.com/AusCovid19
Drawing & Writing helping detect Parkinson’s
Drawing and writing may be a new determiner in catching Parkinson’s in its early stages with new technology able to spot the condition before any obvious symptoms appear. When many of the treatment options are beneficial if Parkinson’s is detected early, this pioneering technology may well allow for early intervention, allowing for patients to receive treatment earlier than ever before.
The pioneering technology-refined from a previous version with an accuracy rate of 93% – was developed by Royal Melbourne Institute of Technology (RMIT) and takes into consideration how Parkinson’s impacts muscle control and activities, thereby affecting how patients write and draw.
A screening test involves patients using a drawing tablet to complete seven dexterity tasks, including drawing a spiral by joining dots, simple writing and writing with memory load. Patient tasks are then assessed which can be used to target specific aspects of their condition. The screening technology can also be used to monitor the effectiveness of patient medications and treatment.
Further patient trials are due to commence in both Australia and China in mid 2020 with the technology hopefully commercially available in two years.
RMIT Professor Dinesh Kumar emphasises how early detection is crucial, especially given that many patients aren’t diagnosed until long after symptoms begin to appear. “As our population ages, the number of people living with Parkinson’s is expected to increase dramatically, so knowing more precisely how the disease is progressing and understanding the effect of different treatments will be crucial in helping them manage their condition,” says Professor Kumar.
Young Onset Parkinson’s Research Results in Interesting Findings
Recent press coverage has highlighted some interesting outcomes from studies of stem cells derived from people diagnosed with Young Onset Parkinson’s. This group is generally defined as those being diagnosed between the ages of 21 and 50.
The researchers at Cedars- Sinai Medical Centre , USA, generated special stem cells ( known as induced pluripotent stem cells or iPSCs) from blood taken from young onset people with Parkinson’s who have no family history of the condition. The process of generating these stem cells involves taking the blood cells ‘back in time ‘to a primitive embryonic state before they could be transformed into dopamine neurons in the lab. The dopamine neurons were then observed to have two key abnormalities:
- The protein associated with Parkinson’s – alpha- synuclein was seen to accumulate
- Lysosomes or cell structures which act as clearance or ‘trash cans’ for the cells to dispose of proteins were seen to malfunction- this could cause the alpha- synuclein to build up.
The researchers suggest that this is a sign that young onset Parkinson’s is present from conception or as the popular press suggests “starts in the womb”.
In addition to this discovery the team at Cedars- Sinai are working on these iPSCs to test a number of drugs which may reverse the abnormalities they found. This is an exciting outcome to the study.
Australian Parkinson’s research receives $30 million
Australian Parkinson’s research is receiving $30 million in Federal Government Funding. Federal Minister for Health, The Hon. Greg Hunt MP, will enable the Australian Parkinson’s Mission (APM) to identify desperately needed modifying drugs with the potential to slow the progression of Parkinson’s.
This is an Australian led international collaboration between Shake It Up Australia Foundation for Parkinson’s Research, Garvan Institute of Medical Research, The Cure Parkinson’s Trust, The Michael J. Fox Foundation for Parkinson’s Researchand Parkinson’s Australia.
CURTIN RESEARCH LATEST NEWS
Parkinson’s WA has awarded Parkinson’s Centre (ParkC) scientists a $70k Zrinski Research Grant to identify subtypes of Parkinson’s in a first-of-its-kind study to help improve quality of life.
Using sophisticated analysis of data collected over a number of years, researchers will identify groups of people based on the pattern of their thinking skills.
Research Director, Dr Andrea Loftus, said the team would examine how participants differ in terms of their quality of life, sleep, and mood.
“Using this information, we will conduct research into how the different subtypes respond to interventions such as non-invasive brain stimulation and cognitive training,” Dr Loftus said.
“It may be that a particular group, for example, those who have difficulties with planning, respond better to cognitive training or brain stimulation than others.
“Parkinson’s is an umbrella term which we think encompasses a range of different symptom groups. It is clear that no one person’s Parkinson’s is the same as another’s, but there are some characteristics which some people have in common.
“We think it is important that these subtypes are identified so we can develop the most effective, customised (to the subtype) intervention.”
Dr Loftus said determining the subtypes and identifying subsequent symptom progression would have major, tangible benefits for people with Parkinson’s in terms of diagnosis, prognosis and treatment.
“We hope this research will also offer another future avenue for interventions to improve cognition and quality of life with Parkinson’s,” she said.
“The end goal is to identify and optimise methods of managing and slowing the progression of Parkinson’s, as well as improving the symptoms and individual experiences.”
Dr Loftus said a study using such a large number of participants and unique style of analysis had not been performed before.
“Also, no study has yet examined subtypes in Parkinson’s over time. This will be an invaluable contribution to the scientific understanding of the progression of Parkinson’s,” she said.
Brains Behind Best Parkinson’s Treatment
A team of neuroscientists have been awarded $200K from the Parkinson’s WA Zrinski Research Grant to find the best surgical technique to treat the main motor symptoms of Parkinson’s.
Led by UWA’s School of Psychiatry and Neurosciences, Professor Sergio Starkstein, and School of Surgery, Professor Christopher Lind, the study will focus on understanding the regions of the brain associated with severe tremor and motor fluctuations, as well as the best technique to treat these symptoms in people with Parkinson’s.
Professors’ Lind and Starkstein’s team seek to improve an existing technique, known as Deep Brain Stimulation, to reduce motor symptoms, by targeting a new region of the brain to achieve better results.
“So far, Deep Brain Stimulation of the subthalamic nucleus, is one of the most effective treatments for patients with Parkinson’s who have marked ON-OFF fluctuations, severe tremor or dyskinesia (involuntary movement) resulting from long-term use of medication,” Professor Starkstein said.
“However, the experience collected during the past 10 years shows that some patients may develop emotional and behavioural side-effects after the surgery, such as apathy and depression, as well as cognitive deficits, such as decline in memory and word fluency.
“Therefore, one of the most interesting challenges in Deep Brain Stimulation for people with Parkinson’s is to find brain sites that provide the best motor improvement with the least side effects.”
Professor Starkstein said his group had been studying a new target for Deep Brain Stimulation, known as the posterior subthalamic area, which promised to deliver similar or even better motor responses upon stimulation, with less emotional and cognitive side effects.
“We completed a pilot study of nine patients with Parkinson’s using the new technique, which showed significant motor improvement in the absence of cognitive deficits or psychiatric changes,” he said.
“We have since started a more ambitious study to determine the site within the new target that delivers the best motor response, while providing the greatest safety in terms of cognitive or psychiatric complications.”
Professor Starkstein said 15 patients had already had surgery and been clinically assessed and the funds from the Zrinski Research Grant would allow the team to add an additional 25 patients to complete the study and clinical assessments.
“We are also acquiring sophisticated brain images which will be analysed with state-of-the-art methods, and hopefully identify those individuals who will obtain the greatest benefit from subthalamic area Deep Brain Stimulation,” he said.
Professor Starkstein said it was the first study to carry out sophisticated brain imaging analysis to identify brain structural and metabolic markers that predict the best motor response.