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The Young Onset Parkinson’s Exchange (YOP-X) Project

The Young Onset Parkinson’s Exchange (YOP-X) Project is in the development stages of creating an innovative app and other online resources to act as an information portal for those living with young onset Parkinson’s. Additionally, educational tools are being developed for NDIS contracted providers and other health professionals, to assist them to meet the needs of people living with young onset Parkinson’s, by raising awareness of the symptoms, issues and the treatments available that can enhance participation in family, work, social and recreational life. 

Consultations are continuing with people living with young onset Parkinson’s across Australia, and have highlighted key areas of focus including:

  • Employment and Legal Issues
  • Exercise and Wellbeing
  • Mental Health
  • Referral Pathways
  • Relationships
  • Planning
  • Step-By-Step to Applying for the NDIS
  • Supporting the Support People

An online platform has been launched for people with young onset Parkinson’s to upload video selfies for use in the development of the educational tools, and contributions are welcome at www.youngonsetparkinsons.org.au

Additionally, a range of national surveys specifically  for people with young onset Parkinson’s have been developed.

The first survey is to capture the workforce experiences of people with young onset Parkinson’s, who often face a reduced capacity to work, or in some cases leave the workforce altogether. During initial consultations, employment was highlighted as a key area to consider for the App development, specifically how it could assist people with young onset Parkinson’s to stay in the workforce for longer. Research indicates that factors other than onset age and the duration of having young onset Parkinson’s influence loss of employment, and therefore developing targeted strategies could support people with young onset Parkinson’s to remain in employment for longer. 

Workforce Survey for People With Young Onset Parkinson’s – http://ems.gs/3uUe0idcPsS

Following this, a relationship survey and partner survey has been released. During initial consultations for the Young Onset Parkinson’s Exchange (YOP-X) Project, relationship issues were highlighted as a key area to consider for the App development. Some people are doing Parkinson’s solo, some are in long-term relationships, and some met their partner following diagnosis. Changes in relationship responses and functioning that come with young onset Parkinson’s can be as a result of the condition itself, as well as the affects of medication or the impact of other factors such as fatigue or changes in partner roles. 

Relationship Survey for People With Young Onset Parkinson’s – http://ems.gs/3uUe0bAcVJC

Partner Survey – http://ems.gs/3uUe0hhcVJO

For more information on the Young Onset Parkinson’s Exchange Project, or to find out how you can be involved, please contact Katie at Katie@parkinsonssa.org.au

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‘What’s new in DBS for Parkinson’s Disease’ by Neurologist Dr Paul Silberstein

INSIGHT into PD has become the largest online global conference for people living with Parkinson’s disease. Movement Disorder Neurologist, Dr Paul Silberstein was one of the 60 expert speakers from around the globe and his talk is now available for viewing, see below.

The video is 30 minutes in length and Dr Silberstein talks about ‘What’s new in Deep Brain Stimulation for Parkinson’s disease’.

The aim of Insight was to offer an opportunity for people living with Parkinson’s, as well as their loved ones and associated health professionals the chance to hear from world leading experts on Parkinson’s disease. In 2020, INSIGHT attracted 9,000 attendees from over 90 countries.

For more information and to register interest for next year’s event, go to www.insightintopd.com

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Insight into Parkinson’s Conference 2020

INSIGHT has become the largest online global conference for people living with Parkinson’s disease. It is delivered entirely online with over 60 speakers presenting on a range of topics and live panels. The event is free for people to attend for the first 3 days of the broadcast (April 1-3, 2020) with a premium upgrade option available for $99 to those who wish to revisit or re-watch some of the content. In 2020, INSIGHT attracted 9,000 delegates from over 90 countries.

INSIGHT 2020, Future Frontiers, offers an opportunity for people living with Parkinson’s, as well as their loved ones and associated health professionals the opportunity to hear from world leading experts, academics, specialists, clinicians and other people living with Parkinson’s in a convenient and accessible online platform unlike anything else. INSIGHT brings the entire conference directly to you in your living room on any internet enabled device 24/7. Watch the presentations, re-visit them in your own time, join the online conversation, and visit the exhibition booths

Here are five reasons to register for INSIGHT 2020!

  1. First three days are free. If you want more, you can upgrade to stream-on-demand for another 30 day access.
  2. You get 60+ World Class speakers direct to your living room
  3. All of the ticket profits go to our registered Charity Partners to support Parkinson’s research and support services globally
  4. INSIGHT is a World First event and the largest online annual event in Parkinson’s
  5. You can connect with over 5,000 researchers, academics, clinicians and other people living with Parkinson’s from all around the world

To register for 30 day Premium access and find out more information about the speakers, go to www.insightintopd.com

More about the Hosts

INSIGHT is organised and hosted by PD Warrior, a team of health professionals and passionate individuals who are dedicated to improving the lives of people living with Parkinson’s all over the world. INSIGHT was started in 2018 and over the first two years the event has hosted over 2000 attendees, nearly 100 speakers and raised just under AUD$50,000 for the Charity Partners! Digital health and communication is growing fast and an online conference, bringing the brightest minds together on a global platform seemed an obvious solution for the PD Warrior team!! Find out more about PD Warrior here

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Australian Parkinson’s Mission (APM) summary

The Australian Parkinson’s Mission (APM) is an Australian-based, international collaboration involving a revolutionary clinical trial design using potential repurposed drugs as well as genomics research.

Update on the APM study by National Trials Lead, Professor Simon Lewis.

Approximately 100,000 people live with Parkinson’s Disease in Australia, with a further 14,000 diagnosed each year.

Current PD treatments target symptoms of the disease, rather than preventing disease progression. APM aims to develop a framework over the next five years to promote effective and individualised treatments to slow the disease progression for Parkinson’s patients.

APM Collaborators

  • Michael J Fox Foundation (USA)
  • The Cure Parkinson’s Trust (UK)
  • Garvan Institute of Medical Research
  • Shake It Up Australia Foundation
  • Parkinson’s Australia
  • The University of Sydney

About the APM study

Recruitment will commence in March 2020. Recruitment is open to people with Parkinson’s disease, including newly diagnosed and those who have been living with the disease for some time.

Recruitment sites will initially commence in the main cities within Victoria, New South Wales and Queensland, with plans to extend recruitment to Australian regional centres.

Participants in the study will undergo genetic and biomarker analysis so that researchers can classify genetic variations specific to their disease. Participants will then be enrolled in trials utilizing repurposed drugs proposed to have a disease modifying effect in Parkinson’s disease.

The benefits of using repurposed drugs is that they have already gone through the expensive and time-consuming clinical trials to get them to market. One of the aims of APM is to offer a faster process from lab to market for people with PD.

Potential benefits of the study include;

  • Measurement of disease progression through biomarker analysis
  • Individualisation of drug treatment for PD patients
  • Protocol development for screening and early intervention of people at high risk of PD
  • Development of a PD sub-classification based on patients’ DNA

For more information, go to www.theapm.org.au, contact the APM via email at info@TheAPM.org.au or phone 1300 770577.

Links to partner websites as follows:

www.shakeitup.org.au

https://www.garvan.org.au/

https://www.michaeljfox.org/

http://www.cureparkinsons.org.uk

https://www.parkinsons.org.au/

https://sydney.edu.au/

http://www.profsimonlewis.com/

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Current Repurposed Drug Trials in Parkinson’s Disease

Drugs that once treated conditions such as type 2 diabetes, cancer, high cholesterol and dementia are now being evaluated in repurposed drug trials in Parkinson’s disease. To find out more, you can read our summary here.

What is a repurposed drug?

A repurposed drug is a drug that has been developed to treat one type of disease, but is being utilised in the treatment of another disease.

The benefits of repurposed drugs are that they have already gone through the expensive and time-consuming clinical trial process to get them to market. Therefore, they can be less costly to develop and more readily available than novel therapies.

Many repurposed drug trials are currently underway in Parkinson’s disease. Examples include:

  • Exenatide – a drug currently used to treat type 2 diabetes, acts on the GLP-1 receptors in the pancreas and brain. Promising research from the UK has shown improvements in motor symptoms of PD in those participants receiving Exenatide, however more research is needed.
  • Liraglutide and lixisenatide – are newer drugs that also treat type 2 diabetes. Initial rodent studies found these drugs were more effective at preventing brain cell death than Exenatide. Currently, there are two trials underway to investigate the effects of these drugs on PDin the US and France.
  • Statins – are often prescribed to help lower cholesterol in people at risk of cardiovascular disease. Research in rodent models suggest statins have protective effects on PD progression, such as; reducing inflammation, oxidative stress damage, as well as reducing the build-up of alpha-synuclein proteins. Currently, a randomised control trial is underway in the UK to assess the effectiveness of a statin – Simvastatin on PD symptoms in 235 patients with mild PD symptoms.
  • Ursodeoxycholic acid (UDCA) – a drug typically used to treat liver disease has been implicated in the restoration of mitochondrial cells (which fuel our cells) in a UK based study. Impairments in mitochondrial function are a key contributor to brain cell death in PD.
  • Nilotinib – used traditionally to treat a form of leukaemia, however recent research has found Nilotinib reduces brain cell death by binding to specific proteins in the brain. A 2015 study found patients who took Nilotinib had a reduction in PD-related motor symptoms.
  • Deferiprone – is used to treat people with excess iron, a common symptom of PD, thought to be due to excess iron found in dopamine-producing brain cells. Promising research from animal models has led to a current European-based trial with over 300 participants to investigate Deferiprone in slowing the progression of PD.
  • Isradipine – is used to treat high blood pressure. It works by blocking the uptake of calcium into cells. Research has found Isradipine also works on dopamine-producing brain cells, leading to reduced calcium uptake and subsequent oxidative damage. A multi-centre clinical trial involving 336 newly diagnosed PD patients is currently underway across the US and Canada. The trial is expected to finish at the end of 2019.
  • Ambroxol – typically used as a cough medication to help reduce the build-up of mucus, has had positive effects in the treatment of PD through increasing the activity of a protein called glucocerebrosidase (or GCase), which control alpha-synuclein levels – a key protein implicated in PD. Current research is underway in the UK and Canada to investigate Ambroxol in PD patients.
  • Rivastigmine – is currently used to treat dementia but has shown promise in PD patients via its ability to increase acetylcholine levels, implicated in memory and concentration. A UK-based study recruiting 600 PD patients is currently underway to investigate the effect Rivastigmine has on PD symptoms.

Repurposed drug trials will soon be commencing in Australia through the Australian Parkinson’s Mission. See our next blog for further information.

The information provided in this article is of a general nature only and is not treatment advice. Recommendations regarding therapy can only be made on a case by case basis, discussed between a patient and their treating doctor/s.

The information in this article was current at December 2019.

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How Common is Parkinson’s Disease?

How common is Parkinson’s disease? A new meta-analysis provides insight into the prevalence of the disease, looking at prevalence in age, sex and location. Interested to learn more? Read our summary here.

The prevalence of Parkinson’s Disease increases steadily with age, according to research published in the journal Movement Disorders.

Analysing worldwide data from 47 studies published from 1985 to 2010, a European research team studied data by age group, geographic location, and sex.

Because it included data from a large number of studies, this meta-analysis provided a valuable insight into how common Parkinson’s Disease really is. 

Specifically, the research team identified the following findings:

A ‘rising prevalence’ of PD with age

The researchers found that Parkinson’s Disease affected:

  • 40 to 49 years – 41 people in 100,000
  • 50 to 59 years – 107 people in 100,000
  • 55 to 64 years – 173 people in 100,000
  • 60 to 69 years – 428 people in 100,000
  • 65 to 74 years – 425 people in 100,000
  • 70 to 79 years – 1087 people in 100,000
  • Older than age 80 – 1903 people in 100,000

A ‘significant difference’ in prevalence by geographic location

For people aged 70 to 79, the researchers found that 1,601 people from North America, Europe, and Australia had Parkinson’s Disease – compared with 646 in individuals from Asia (P< 0.05).

Parkinson’s disease prevalence varies by gender, but only for people aged 50 to 59

A significant difference in prevalence by sex was found only for individuals 50 to 59 years old, with a prevalence of 41 in females and 134 in males (P< 0.05). ie PD is more common in men in the 50-59 year old age group.

 “These findings argue for further epidemiologic surveys, specifically with high-quality screening instruments for Parkinson’s Disease and confirmation of diagnoses with sensitive, internationally accepted diagnostic criteria to ensure greater

Comparability,” the researchers wrote.

The researchers argue that longer-term prospective studies would help establish whether the clinical progression and prognosis of the disease differs between racial groups and among different parts of the world.

The team also hope that demonstrating reliable differences in prevalence can provide opportunities for more refined studies that might provide information as to how a patient’s genes or environmental factors influence disease susceptibility, progression and treatment response.

Further, the research team noted the importance of Prevalence studies in assisting Governments and Health services to plan appropriate treatment resources for PD in the context of an aging population.

Summary of the article here https://www.ncbi.nlm.nih.gov/pubmed/24976103