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DECEMBER 2010

EPDAUPDATE

WELCOME

e-newsletter DECEMBER 2011

A new year is fast approaching, which makes it a good time to reflect on each of our achievements over the past 12 months or so. For the EPDA, 2011 has been a year of immense change and progress – culminating two weeks ago in the first ever Parkinson's debate in the European Parliament. It was a huge occasion for everyone involved – particularly the MEPs, who listened, learned and understood (some for the first time) the problems associated with living with the disease, and for the people with Parkinson's who travelled to Brussels from around Europe to discuss with the policymakers their hopes for the future as well as the current issues that must be addressed. Everyone left the Parliament with their spirits lifted and the belief that change was possible. Such developments make 2012 even more important as this was hopefully just the first step of many. The EPDA wishes you all a very Merry Christmas and Happy New Year and looks forward to working with you all next year to ensure that every person with Parkinson's and their families get what they deserve: a louder voice in Europe and a better quality of life.

 

 READ ALL ABOUT IT!

EPDA NEWS
     
Move for Change campaign MEMBERS RE-ELECT BOARD

The EPDA board has been re-elected for a new three-year period. The elections took place at the EPDA's general assembly in the UK in October. Knut-Johan Onarheim remains president, while Susanna Lindvall (vice-president), Mariella Graziano (treasurer) and Ami Ariel (member) unanimously retain their positions. Ann Kielthy was also re-elected but is now a member (she was previously young onset representative).

 
READ ALL ABOUT IT
The results from the first EPDA Move for Change survey have now been published in the European Journal of Neurology. The survey asked whether people with Parkinson's were being referred to a doctor with a special interest in Parkinson's and whether they received an accurate diagnosis. The results made for very interesting reading and the article – written by two high-profile Parkinson's specialists – is available here.
European Parkinson's Disease Standards of Care Consensus Statement Life with Parkinson's campaign European Unity Walk
A HIGH-PROFILE
LAUNCH		 EPDA LAUNCH
LwP III		 SAVE THE
DATE
The EPDA's first ever Parkinson's debate in the European Parliament was a huge success with more than 20 MEPs and their parliamentary assistants attending. The lunchtime event was held on 22 November and also saw the launch of the EPDA's European Parkinson's Disease Standards of Care Consensus Statement. "The event was better than we could have hoped for. The EPDA has grown stronger as a result and Parkinson's has gained some new high-profile friends," said EPDA president Knut-Johan Onarheim. See the next issue of EPDA Plus, out in January, for full details of the event. Work has begun on the production of the third and final part of the EPDA's awareness campaign materials that will address the necessity of an accurate diagnosis and the importance of the right treatment for the right person at the right time. Being prepared in readiness for the EPDA's 20th anniversary celebrations in Amsterdam on Saturday 29 September, the booklet will include tests and checklists for people with Parkinson's to use to make changes in their own treatment and disease management, information on how to monitor the progress of Parkinson's over time and much more.

The EPDA's inaugural European Unity Walk is to take place on Friday 28 September 2012. More details will be announced over the coming weeks and months but the EPDA is urging its members and stakeholders to raise as much awareness about the event as possible. "The walk is gaining a lot of momentum," said EPDA president Knut-Johan Onarheim "Our members are excited and so is the industry. We want this first walk to be the first of many – we've big things planned but the event will only be a long-term success if our members and partners get behind us. Please save the date and join us in raising vital awareness about Parkinson's in Europe."

POLICY NEWS
 
European Year 2012 of Active Ageing and Solidarity between Generations EU'S HEALTHY FUTURE

The EU is formulating its European Innovation Partnership on Active and Healthy Ageing (EIP AHA) in an attempt to pursue a "triple win" for Europe – healthy elderly, healthy public finances and healthy business. The strength of Europe's ageing societies depends on older people staying healthy, active and independent as long as possible, the EU says, and its target is to increase the number of healthy life years in the region by an average of two years by 2020. The EPDA is involved in an informal advisory capacity on the EIP AHA process to ensure a successful outcome for older people with Parkinson's and their carers.

 
GO-AHEAD FOR EY2012
The European Year 2012 of Active Ageing and Solidarity between Generations (EY2012) has successfully been adopted by the three EU decision-making institutions (the European Commission, the Council and the European Parliament). This 'European Year' will move beyond the objective of longer working lives to include other aspects such as active citizenship, older volunteering, support to healthy and independent ageing, informal care and solidarity between generations. The European Year 2012 will be officially launched on 18-19 January 2012 in Copenhagen under the Danish Presidency.
Stem Cells Joint Programme on Neurodegenerative Disease Research EDF meets EU President
EU STEM CELL
THREAT		 NEW JPND
IINVESTMENTS		 CLINICAL
TRIALS BOOST
The European Court of Justice (ECJ) has banned the patenting of any stem cell research that involves destroying a human embryo. Scientists fear the ruling – hailed by many Catholic groups – may drive researchers to the US, China and other countries and prevent patients from accessing new medicines. The European Union's highest court ruled that any human ovum must, as soon as fertilised, be regarded as a 'human embryo' if that fertilisation is to commence the process of development of a human being. The European Commission said it needed time to look at the ECJ ruling. The ruling is not exactly clear if it distinguishes scientific research from industrial or commercial application.

The Joint Programme on Neurodegenerative Disease Research (JPND)-endorsed Centres of Excellence in Neurodegeneration Research (COEN) initiative has announced investment in eight new international research projects that will address key issues in neurodegenerative disease research. The COEN initiative, launched in 2010, funds highly innovative research in the field of neurodegenerative diseases such as dementias and Parkinson's. €3.7 million has been awarded to the new projects.

The World Health Organisation (WHO) has recognised the European Union Clinical Trials Register (EU-CTR) as one of the primary registries for its International Clinical Trials Registry Platform (ICTRP). ICTRP is a web-based portal that allows access to a wide range of information from different clinical trial registers from across the world. EU-CTR's recognition means that its information will be available through this portal by the end of the year. It is also an endorsement of EU-CTR's importance for potential clinical trial participants as well as sponsors, researchers, ethics committees and policymakers. EU-CTR is managed and hosted by the European Medicines Agency.

Innovative Medicines Initiative IMI CLOSES ITS CALL
The Innovative Medicines Initiative (IMI) closed its 4th call for proposals in October. The public-private partnership between the European Commission and the pharmaceutical industry works to increase the competitiveness of the European research and development industry, and ultimately aims to make the EU the global leader in research and accelerate the time it takes to develop drugs. Several large collaborative multinational trials have now been run successfully through the project, and the initiative's model is being seen as a global example of best practice in innovation and research.
Corporate social responsibility European Public Health Alliance's MEP Ádám Kósa
EUROPE ACTS
RESPONSIBLY		 SIGN UP
NOW		 EU GETS
INCLUSIVE
The European Commission has redefined corporate social responsibility (CSR) as "the responsibility of enterprises for their impacts on society" and implemented a new strategy to outline what an enterprise should do to meet those responsibilities. The strategy recommends that companies put in place processes that integrate social, environmental and ethical human rights and consumer concerns into their business operations and core strategies. Importantly, the key opinion from the Commission's 2008 competitiveness report – that CSR is most likely to contribute to the long-term success of a business – is still held. There is still time to sign the European Public Health Alliance's (EPHA) European Charter for Health Equity before the window closes at the end of the year. Launched last December, the Charter seeks to promote and support health equity through the co-operation of the EPHA's relevant stakeholders to ensure proper attention is given to the needs of the most vulnerable groups in society. To access and sign up to the Charter, click here. The EU needs to get more people with disabilities into jobs and include provisions on disability in more of its other policies, said the European Parliament in a resolution in October. The Parliament voted in favour of the report, entitled "Mobility and inclusion of people with disabilities and the European Disability Strategy 2010-2020", which underlined the necessity to improve the access of people with disabilities to the labour market. According to the report, only 30% to 40% of people with disabilities are currently working. Such a rate of employment is "too low and highlights the need for the European Commission to reinforce anti-discrimination and accessibility provisions", said MEP Ádám Kósa.
STEP FORWARD FOR MRI Magnetic Resonance Imaging
The European Commission has taken an important step to ensure the future of Magnetic Resonance Imaging (MRI) for patients across Europe by proposing new legislation to protect workers from electromagnetic fields. MRI is a key tool against major threats to human health, including brain disease. The Commission's proposal, unveiled in June, addresses concerns that European workers' protection legislation – set to come into force in April 2012 – would curtail the use of MRI. The proposal is currently under discussion in the European Council and the European Parliament. If adopted, it would exempt MRI workers from exposure limits that are inappropriate for MRI but ensure its availability to patients.
European Year of the Brain EYOB GAINS MOMENTUM
The European Brain Council (EBC) has sent an open letter to European Commission president Jose-Manuel Barroso. The letter follows the submission of a file from Commissioner Máire Geoghegan-Quinn, which formally proposes that 2014 should be the European Year of the Brain (EYOB). The open letter was signed by more than 190 organisations, including patient groups, scientific societies, universities and many of the EBC's long-standing partners and supporters to show the "depth and breadth of support for the EYOB and the need for the earliest possible decision to allow the coalition to adequately plan for the year".

GENERAL NEWS
 
Parkinson's drugs PD DRUGS FACE STRUGGLE

Over the next decade, the market for Parkinson's drugs in the US, France, Germany, Italy, Spain, the UK and Japan will be constrained by generic competition to key therapies, according to a new report from advisory firm Decision Resources. By 2020, a number of key Parkinson's therapies will lose patent protection while others will face increasing generic competition. The report predicts that overall sales in this market will decrease slightly from $2.7 billion in 2010 to $2.6 billion in 2020 in the top seven markets. Most sales will continue to be driven by the leading dopamine agonists, it claims, while despite some key current therapies experiencing increased uptake during the forecast period and the launch of three new agents by 2020, sales of current agents and the impact of emerging therapies will be offset by generic competition.

 
CNS FACES SLOW GROWTH
In a similar report, therapeutics for the central nervous system (CNS) are predicted to grow at just 1.4% between now and 2017, when the market will hit $58.6 billion. The report, entitled 'Central Nervous System Disorders Therapeutics Market to 2017', claims that the overall global CNS disorder therapeutics market for the eleven indications (that includes Parkinson's) will witness a comparatively slow growth despite the ageing global population. The Alzheimer's disease and multiple sclerosis markets are expected to witness a significant growth, however. The report is available here.
Ticking bomb Chronic pain Fake medicines
A 'TICKING
TIME BOMB'		 A PAINFUL
SURVEY		 EAASM FIGHTS
BACK
The annual cost of brain disorders in Europe has soared to an astonishing €798 billion and they now affect more than a third of the continental population, according to a new study that describes the phenomenon as a social, political and financial "ticking bomb". This figure – which equates to €1,550 per European – is more than double the estimate made in a similar 2005 report. The new report, entitled 'Cost of disorders of the brain in Europe 2010' and commissioned by the European Brain Council (EBC), argues that brain disorders represent "the number one economic challenge for European healthcare now and in the future". People's levels of pain across Europe are not being adequately assessed in more than 50% of cases, new research has revealed. The new research – initiated by OPENMinds Primary Care (OMPC), a group of physicians with a special interest in pain – revealed that 52% of European primary care physicians use no form of pain assessment tool. Other key findings showed that 84% of physicians agreed that chronic pain is one of the most challenging conditions to treat, and 81% agreed that the impact of chronic pain on patients' quality of life tended to be under assessed in primary care. The European Alliance for Access to Safe Medicines (EAASM) has launched a groundbreaking online initiative that aims to intercept hundreds of thousands of potential victims of fake medicines. The not-for-profit organisation has created its own fake online pharmacy, mimicking the activities of criminals who sell fake medicines via the internet. Once attracted to the site, the visitor is provided with safe medicines information and directed to a list of regulated online and retail pharmacies. "The project has started really well. Early data has revealed the number of visitors to the website's 'shop front' or landing page is already in the tens of thousands – and this number is rising rapidly," said Mike Isles, EAASM's executive director.
Parkinson's disease nurse specialists MORE PDNSs NEEDED
More Parkinson's disease nurse specialists (PDNSs) are needed to deal with the rapidly growing number of people with the condition and cut costs both for them and taxpayers, according to a new Australian report. The 2011 update of the Deloitte Access Economics report, 'Living with Parkinson's Disease', noted that each one of the UK's 264 Parkinson's nurses save the nation's taxpayers up to AUS$60,000 in consultant appointments, AUS$105,000 in avoided hospital admissions and AUS$194,000 in hospital bed days each year, based on a recent figures from Parkinson's UK. Patient organisation Parkinson's Australia wants to increase the numbers of Australian PDNSs to 200, up from 33.

RESEARCH NEWS
 
Carbon nanoparticles Levodopa Iron in their brains
NEW PARKINSON'S
DIAGNOSIS?		 NEW L-DOPA
EVIDENCE		 REAL IRON
MEN?
Scientists have developed a new method to diagnose Parkinson's at a much lower cost than current systems. The new test – devised by researchers from the Institute of Physical Chemistry at the Polish Academy of Sciences (PAS) – could more easily allow physicians to detect dopamine, even in the presence of interferences. The process involves electrodes coated with carbon nanoparticles deposited on silicate submicroparticles, with the electrodes successfully applied to determine dopamine concentration. Results of a new study provide no evidence that levodopa accelerates nerve cell death in the substantia nigra in people with Parkinson's. "This means that physicians should not be afraid to start levodopa early in the course of the illness – even in young onset patients – but that the dose should not be increased above 600 milligrams a day in the first five years of treatment," said Andrew J Lees, one of the study's researchers. The UK study was published in September in Neurology. Just the right amount of iron is needed for proper cell functioning – but an excess could trigger brain diseases such as Parkinson's and Alzheimer's, new research says. Men have more iron in their system than women, which may explain why they develop these age-related degenerative diseases at a younger age, according to a University of California, Los Angeles (UCLA) study. It also claimed that as women lose iron through blood loss during menstruation, so a lesser number of them have these diseases. The researchers found that the women who had undergone a hysterectomy had higher levels of iron in their brains than the women who hadn't (compared to that of the men), according to a UCLA statement.
Brain proteins BRAIN PROTEINS DISCOVERY
New research suggests that small "seed" amounts of diseased brain proteins can be taken up by healthy neurons and propagated within them to cause neurodegeneration. The research, published by Cell Press in October, sheds light on the mechanisms associated with Parkinson's and provides a model for discovering early intervention therapeutics that can prevent or slow the devastating loss of neurons that underlies the disease. The research may lead to new therapies that can prevent the diseased protein from spreading to healthy neurons (causing irreversible damage), researchers said.
Bicycling Michael J Fox Foundation Dr Foteini Hassiotou
PWPs GET ON
YOUR BIKE		 MJFF FUNDS
PD VACCINE		 BREAST
PRACTICE
Japanese researchers have new evidence that supports existing reports that the ability to ride a bike can differentiate between atypical parkinsonism and Parkinson's – regardless of the environment or cycling conditions. Atypical parkinsonism disorders look similar to Parkinson's but respond differently to treatments. The researchers found that patients with atypical parkinsonism lose their ability to cycle during the early phase of the illness, while patients with Parkinson's continue to ride well. The study found that 88.9% of Japanese patients with atypical parkinsonism had ceased cycling during the few years around the onset of their illness, compared with only 9.8% of the patients with Parkinson's. The Michael J Fox Foundation (MJFF) has awarded $1.5 million to AFFiRiS AG, an Austria-based biotech company, for a clinical study of AFFITOPE® PD01, a first-of-its-kind Parkinson's vaccine. AFFITOPE® PD01 targets and helps remove the alpha-synuclein protein, whose clumping is the pathological hallmark of Parkinson's. "PD01 represents the first time a vaccine approach to Parkinson's has been studied in the clinic, and while it is still in the early stages of testing, its potential to stop the progression of the disease itself could lead to a breakthrough in how we treat PD," said Todd Sherer, MJFF CEO. Human breast milk has the potential to help people living with brain diseases such as Parkinson's, according to a researcher at The University of Western Australia. Dr Foteini Hassiotou claims to have discovered that human breast milk contains stem cells that are able to turn into not only breast cells, but also cells of the bone, cartilage, fat, brain, liver and pancreas, depending on the medium in which they are grown. "If we can understand the properties of these cells and their role in the breast and in the breast-fed baby, we can use them as models for breast cancer research and in innovative stem cell therapies," she said.
Physical therapy games ETSense Industrial solvents
IT'S IN THE
GAME		 A GREAT
IDEA		 SOLVENT LINK
TO PD
Playing computer-based physical therapy games can help people with Parkinson's (PWPs) improve their gait and balance, according to a new pilot study led by the University of California, San Francisco's School of Nursing and Red Hill Studios, a California serious games developer. More than half the subjects in the three-month research project showed small improvements in walking speed, balance and stride length. The researchers collaborated to produce nine "clinically inspired'' games that were designed to improve PWP co-ordination. US-based Great Lakes NeuroTechnologies has received two federal grants totalling about $2 million to develop its technologies for home-based monitoring of movement disorder patients. The largest of the two grants from the National Institutes of Health – worth $1.7 million – will go toward the development of a portable essential tremor monitor that will classify tremor type and rate tremor severity continuously throughout the day while a patient performs typical activities. The essential tremor monitoring system, called ETSense, collects data via a motion sensor placed on a patient's finger.

An international study has linked an industrial solvent to Parkinson's. Researchers found a six-fold increase in the risk of developing Parkinson's in individuals exposed in the workplace to trichloroethylene (TCE). Although many uses for TCE have been banned around the world, the chemical is still used as a degreasing agent. The research was based on analysis of 99 pairs of twins selected from US data records. Research to date suggests a mix of genetic and environmental factors may be responsible for the disease's development. A link has also previously been made with pesticide use.
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