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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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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

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Drs Cook & Silberstein feature on the cover of the North Shore Times/Mosman Daily

Neurosurgeon Dr Raymond Cook and Neurologist Dr Paul Silberstein feature on the cover of the North Shore Times/Mosman Daily in the story ‘Brains trust: The north shore team taking the fight to Parkinson’s disease’.

The story talks about the work both doctors do for people that are living with Parkinson’s disease and features an interview with a Parkinson’s patient, Carole McFadden, whose life has profoundly changed after recently having deep brain stimulation surgery at North Shore Private Hospital.

Shake it Up Australia Foundation founder, Clyde Campbell, also discusses the journey that led him to launch the foundation, and the impressive work they do to fund medical treatments with the aim of finding a cure for Parkinson’s disease.

The full story can be accessed online at http://newslocal.smedia.com.au/north-shore-times. Click on ‘back issues’ to access archived editions of the weekly newspaper.

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Video documents NSPH’s 500th DBS surgery milestone

Neurosurgeon Dr Raymond Cook, Neurologist Dr Paul Silberstein and the Sydney DBS team recently completed their 500th Deep Brain Stimulation (DBS) surgery and this milestone has been documented in a video produced by North Shore Private Hospital.

The Sydney DBS team, who have worked together for 14 years at North Shore Private Hospital, have been a key group in the renaissance of Parkinson’s disease and Movement Disorder surgery in Australia, and continue as the most experienced DBS team in NSW. 

DBS involves the placement of stimulating electrodes in specific deep brain targets by a neurosurgical team. These wires are routed under the skin to an implanted battery, placed in the chest or abdominal wall. The battery produces a continuous impulse to the brain and provides 24 hour therapy to alleviate symptoms. 

In Parkinson’s disease, DBS improves consistency of symptom control when this cannot be achieved with medication, reduces excessive movement (dyskinesia), facilitates a reduction in drug therapy and improves quality of life. DBS is also effective in substantially reducing symptoms in a number of other medication refractory Movement Disorders including Tremor syndromes, Dystonia and Tic disorders. 

Successful therapy requires high surgical accuracy. The Sydney DBS team uses state of the art surgical equipment, carefully selected and sourced from international suppliers, and takes pride in surgical precision, high efficacy and a low complication rate. Excellent post-operative care is provided in the North Shore Private Intensive Care Unit and Neurosurgery ward.