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EPDAUPDATE |
WELCOME |
e-newsletter APRIL 2011 |
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Spring is upon us, which signifies that an immensly busy period in the world of Parkinson's is already under way. It's World Parkinson's Disease Day on Monday, which means the entire month of April and beyond will see increased Parkinson's activities taking place, activities that are designed to raise awareness and improve the management of the disease. The EPDA's Move for Change campaign, the EU Clinical Trials Register, the fifth European Patient Rights day – these are just a few of the initiatives that require your help and support to make them all a success – so please read this newsletter carefully and follow the links where necessary to ensure all the hard work already done is not wasted. Together we can make a difference.
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EPDA NEWS |
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| EPDA ON THE MOVE |
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The second of the three EPDA Move for Change online surveys will launch on 11 April. It will look at the availability of support services across Europe and will identify:
- What levels of support services are available?
- How often are support services accessed?
- Who makes the decision to refer?
- If there is no referral, how do people with Parkinson's get support services and how do they find out about them?
- How are the support services funded?
"EPDA member organisations need to encourage their national members and network of healthcare professionals and PWPs to promote this survey as widely as possible," said EPDA president Knut-Johan Onarheim. "It is only with their help that we will be able to measure healthcare in Europe and tackle the inequalities that currently exist." The survey will be online until 28 October. For more information, go to www.epda.eu.com/m4c-survey. |
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END OF LIFE
GOES LIVE |
APRIL
ACTIVITIES |
A MEETING
OF MINDS |
| A new section of the EPDA's Parkinson's Decision Aid website, entitled 'End of life – Managing final stage Parkinson's', has been written to provide support to those in need of answers to questions relating to palliative care and the final stages of Parkinson's. Information on topics such as palliative care treatments, practical support, ethical concerns, and carer support is presented using easy-to-read information sheets, while there are also a wide range of helpful resources to complement these. Visit parkinsonsdecisionaid.eu.com for more information. |
The materials for the second part of the EPDA's Life with Parkinson's awareness campaign – which focus on non-motor symptoms – have been translated into Greek, Hungarian, Norwegian, Romanian, Slovenian and Swedish. These materials will now form a vital part of their respective countries' World Parkinson's Disease Day and European Parkinson's Action Day activities this April, and will be disseminated to policymakers, healthcare professionals and the general public as well as the media. In other parts of Europe, Parkinson's organisations will be holding many media events that will involve important political and healthcare supporters in an attempt to enhance the profile of Parkinson's within their national health agendas. |
The joint session between the EPDA and the European Federation of Neurological Associations (EFNA) – held at the second World Parkinson Congress last year – is now available via the EPDA website. This unique session demonstrates – through a dynamic on-stage role play – the many obstacles that currently stand between getting a new medication from the laboratory bench to achieving full regulatory approval. At the same time, the session demonstrates what could be achieved if all the members of the healthcare industry were to work together and listen to each each other. See www.epda.eu.com/projects/wpc-2010-symposium-video. |
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EPDA GA INFO |
The EPDA's Leaning In Partnership workshop and General Assembly (GA) will now be held from Friday 7 October to Sunday 9 October 2011 at Runnymede-on-Thames, Windsor Road, Egham, Surrey, UK TW20 0AG. Online registration will be available from Monday 2 May 2011. It's also election year – when EPDA Board members are elected by the GA for a two-year term (2011-2013). The Board has received the following nominations for a further term of office, which are fully supported in writing by their national association Boards:
- Knut-Johan Onarheim, Norway – President
- Susanna Lindvall, Sweden – Vice-President
- Mariella Graziano, Luxembourg – Treasurer
- Ami Ariel, Israel – Member
- Ann Keilthy, Ireland – Young Onset Representative
- Vacant position – Secretary
Further nominations for all the above positions are welcomed and are to be emailed to lizzie@epda.eu.com no later than Monday 16 May.
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GETTING A GOOD REVIEW |
| As part of the EPDA's collaboration with the quarterly European Neurological Review, EPDA members can receive free eBook access to the latest editions of the review journal (Volume 6, Issue 1 is the latest issue). Directed by an editorial board of internationally respected physicians, the journal's peer-reviewed articles endeavour to disseminate best practice through leading opinion and review articles in order to assist physicians and other interested parties to continuously develop their knowledge, effectiveness and productivity. EPDA members can access the edition in full and for free at www.touchbriefings.com. See also www.touchneurology.com. |
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GENERAL NEWS |
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ON THE RIGHTS
TRACK |
LOG ON TO
PARKINSON'S |
TIME TO
REGISTER |
| The fifth European Patient Rights day is to be held across Europe from 11-12 April in an attempt to encourage EU policymakers to discuss and commit to improving patients' rights across the continent and put citizens at the centre of health policy. However, this can only be guaranteed if patients' rights are respected in the first place, which will only occur if the co-operation and commitment of all healthcare stakeholders in every EU country is achieved. Your support is therefore vital. Translated materials that will encourage these rights in your own country can be found at www.activecitizenship.net. |
DataDriven Health Care Solutions has introduced an online resource – entitled MyPDLog – that records the names, times and dosages of Parkinson's medications, as well as different moods and symptoms that might be experienced. "People with Parkinson's can log into their account and enter their relevant information and everything will be automated for easy access and future use," said a company spokesperson. "This means there should be no more missed entries, inaccurate times or bad data to confuse people's disease management. It is a reliable way of collecting critical information that can be used by patients themselves, or by doctors in order to record the data of their patients." Visit datadrivenhealth.org for more information. |
The EU Clinical Trials Register has been launched by the European Medicines Agency (EMA). The online register for the first time gives the public access to information on interventional clinical trials for medicines authorised in the 27 EU member states and Iceland, Liechtenstein and Norway. The database also allows the public to search for information on clinical trials authorised to be carried out outside the EU if these trials are part of a paediatric investigation plan. For further information: ec.europa.eu/health/human-use/clinical-trials/index_en.htm |
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APPDE IN PHYSIO DRIVE |
| The Association of Physiotherapists in Parkinson's Disease Europe (APPDE) is developing a European guideline for physiotherapy in Parkinson's. The guideline will consist of key questions based on the inventory of barriers and unmet need in current care; a systematic literature review; other considerations, including feasibility and costs; and practice recommendations. "We are delighted that we have not only gained funding to start this ambitious project, but also to receive such an enthusiastic response from all over Europe," said APPDE president Mariella Graziano. In total, 18 member countries of the European Region of the World Confederation for Physical Therapy (ER-WCPT) will be participating in the guideline development. |
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| US PARKINSON'S BILL HOPE |
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| US senator Mark Udall announced in March that he and four other senators will introduce a bi-partisan bill to establish national registries of neurological diseases, such as Parkinson's. The National Neurological Diseases Surveillance System Act would establish a national database to collect and analyse information for researchers. There is currently no existing national system to access accurate data. "Creating a national registry will give the research community a one-stop shop for data collection on these and other neurological diseases from around the country," said Udall (pictured). "This legislation is just what we need to bridge numbers and science to better treatments, better programmes, and perhaps one day, a cure." |
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RESEARCH NEWS |
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A BRITISH BREAKTHROUGH |
Scientists are claiming to have overcome a key problem in treating common memory and brain disorders, which could herald a new generation of treatments. A study has revealed a novel way to get medicines into the brain to treat conditions such as Parkinson's and Alzheimer's. Until now, it has been difficult to get drugs into the brain because of an efficient filter known as the blood-brain barrier. Now a team from Oxford University says it has discovered how to hide medicines from this filter by attaching them to tiny molecules, released by cells, called exosomes. However, they believe it may be a few more years before the technique is safe enough to test on humans.
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| A WELCOME DISCOVERY |
| New research suggests that microglial cells – the nerve system's primary immune cells – play a critical part in neurodegenerative diseases, such as Parkinson's. The over-activation of these cells in the brain can cause inflammation, resulting in neuronal death, say scientists at Karolinska Institutet and Seville University, working in collaboration with colleagues at Lund University. They claim to have found a way to prevent the activation of the microglia and consequently the inflammation they cause. The key is the blocking of enzymes called caspases, which, the team has shown, control microglial activation. "The caspases are a group of enzymes known for causing cell death," says associate professor Bertrand Joseph, who headed the study. "That they also serve as signal molecules that govern the activity of other cells was an unexpected discovery that gives them an entirely new physiological role." |
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THE PRIZE
GOES TO... |
BRAINSWAY
BOOST |
ANTIOXIDANT
POTENTIAL |
| The Grete Lundbeck European Brain Research Foundation has awarded its 2011 Brain Prize to three Hungarian scientists 'for their wide-ranging, technically and conceptually brilliant research on the functional organisation of neuronal circuits in the cerebral cortex, especially in the hippocampus, a region that is crucial for certain forms of memory'. The three scientists are all native Hungarians, who from their current locations in Europe and the US share an interest in the way in which circuits of nerve cells process information in the brain. The Brain Prize is awarded to one or more scientists who have distinguished themselves by an outstanding contribution to European neuroscience. |
Transcranial Magnetic Stimluation (TMS) manufacturer Brainsway has reported success in its Deep TMS clinical trial treatment of Parkinson's. The two-year trial of people with Parkinson's (PWPs) at the Sheba Medical Center Tel Hashomer, Israel, found that magnetic stimulation of prefrontal and motor cortex was safe and effective in significantly improving PWPs' motor function. Nearly 50 PWPs participated in three studies, where they received 12 treatments over a 30-day period. They were examined using standard motor function tests after one, 10, 30 and 60 days. Brainsway CEO Uzi Sofer said: "This is unquestionably good news for PWPs, who can receive non-invasive treatment for their disease." |
Researchers are to investigate the role of antioxidant Coenzyme Q10 in Parkinson's, it has been announced. Coenzyme Q10 helps cells to produce energy and protect against toxic chemicals that those people with Parkinson's battle against. Funded by the Michael J Fox Foundation, the study is to research a new formulation of Coenzyme Q10 and Vitamin E. Dr Kieran Breen, director of research and development at Parkinson's UK, said that the substance has shown potential in human trials before, but researchers have struggled to find the right dose. "This new study could pave the way towards truly effective Coenzyme Q10 treatments that can slow the development of Parkinson's," he said. |
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SERVICE AND
REPAIR |
A SAD
STORY |
PD GENE
BREAKTHROUGH |
| A group of scientists at US-based Marshall University is conducting research that may lead to new treatments for the repair of the central nervous system. Dr Elmer M Price, who heads the team, said the group had identified and analysed unique adult animal stem cells that can turn into neurons. Price said these neurons appear to have many of the qualities desired for cells being used in the development of therapies for slowly progressing, degenerative conditions such as Parkinson's. What makes the discovery particularly interesting, he added, is that the source of these neural stem cells is adult blood, a readily available and safe source – unlike embryonic stem cells, which have a tendency to cause cancer when transplanted for therapy. |
US researchers from the Brookhaven National Laboratory, Cold Spring Harbor Laboratory and the University of California, San Diego, have claimed to have discovered a specific region of the brain that is affected during 'chronic' or untreatable depression. The region is called the lateral habenula, and the cells in this region are activated by unpleasant events, the scientists wrote in the journal Nature. They added that they used two animal models (mice): one of 'learned helplessness' (imitating depression) and a control group. They found hyperactivity of the lateral habenula in the helpless rodents and no activity in the control group. |
US scientists at the University of Colorado School of Medicine have discovered a drug that stops the progression of Parkinson's in mice and is currently testing it on humans. "We've now discovered that we can prevent the progression of the disease by turning on a protective gene in the brain," said senior author Curt Freed. Lead author Wenbo Zhou and Freed, a notable US pioneer in Parkinson's research, have found that the drug phenylbutyrate turns on a gene that can protect dopamine neurons in Parkinson's. The gene, called DJ-1, can increase production of antioxidants such as glutathione, which reduces the debilitating effects of excess oxygen in brain cells. |
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GENE THERAPY
HOPE |
PROTEIN
POSSIBILITY |
BERRY
INTERESTING |
| An experimental gene therapy used on people with Parkinson's disease (PWPs) has been found to significantly ease motor function problems, opening the way for a possible new treatment. In a study published in the Lancet, 45 PWPs with moderate to advanced Parkinson's were enrolled in a clinical trial run by Neurologix, Inc, which is developing the gene therapy. In the Phase 2 trial, 22 patients were randomly assigned the therapy and 23 underwent a "sham surgery" designed to make them believe they might have received the treatment. After six months, the PWPs who received gene therapy showed a 23.1% improvement in their motor score, against a 12.7% improvement in those who didn't. The leaders of the trial said they were working with the Food and Drug Administration to launch a Phase 3 trial – the next step before seeking approval to market the treatment. |
Iowa State University researchers have discovered a protein pathway that may hold the secret to understanding Parkinson's – and possibly some hope for a cure. Professor Anumantha Kanthasamy (pictured) had explained in previous research that a novel protein – known as protein kinase-C (specifically PKCd) – kills essential dopamine-producing cells in the brain. Now Kanthasamy has shown how to modify the production of the kinase-C and, more importantly, how to inhibit it. The process begins with a protein called alpha-synuclein that – after interacting with other proteins in cells – becomes part of the protein complex that modifies the level of kinase-C in the cells. One of the proteins that alpha-synuclein interacts with inside the cell is known as p300, and by changing the activity of p300 protein, Kanthasamy believes that production of the destructive kinase-C will be inhibited. |
Berries may offer sweet hope in reducing the risk of Parkinson's, it has been reported. Harvard School of Public Health researchers examined the effect on Parkinson's of flavonoids – a dietary component found in citrus fruits, chocolate and berries. The study was released in March and will be presented at the American Academy of Neurology's annual meeting in Honolulu in April. The study found that the top 20% of males who consumed the most flavonoids were 40% less likely to develop Parkinson's than the bottom 20% of men who consumed the least amount of flavonoids. In women, there was no correlation between overall flavonoid consumption and Parkinson's, which is unexplained. |
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COGNITIVE
CLUES |
THE PARIS
PROSPECT |
RUSH HOUR
IN THE US |
| US researchers at the University of Pennsylvania in Philadelphia have claimed to have developed a blood test capable of determining the level of mental impairment likely to be experienced by people with Parkinson's (PWPs). The new test, the first of its kind, examines the level of epidermal growth factor, or EGF, found in PWPs. The scientists determined that those with the lowest levels of EGF are eight times more likely to develop dementia symptoms than other PWPs. To read more about the findings, visit www.uphs.upenn.edu. |
A protein known as PARIS has been found to facilitate the most common type of Parkinson's, the findings of which could lead to new targets for treatment. Research, published in the journal Cell, found that PARIS accumulates when the Parkin gene – which protects brain cells by tagging certain toxic elements for destruction – is mutated. Too much PARIS lessens the production of a protective protein called PGC-1α, leading to less protection for brain cells and, subsequently, faster progression of Parkinson's. |
Physicians at US-based Rush University Medical Center are testing a unique gene therapy product called CERE-120 to evaluate if its use can improve the symptoms of Parkinson's. Rush is one of 11 sites in the US that are enrolling people with Parkinson's (PWPs) into the new, double-blind trial. CERE-120 is an experimental gene transfer drug, which contains the human gene for neuturin, a naturally occurring protein also known as a 'neurotrophic factor'. Neurosurgery is used to deliver the neuturin directly to degenerating or dying dopamine neurons in the brain. "This gene therapy has the potential to improve the symptoms of Parkinson's while also delaying further disease progression," said Dr Christopher Goetz, the principal investigator of the study. |
This is a special mailing for European Parkinson's Disease Association (EPDA) members, associated parties and sponsoring bodies. If you have received this email in error or would like to be removed from future mailings, please contact the EPDA. We apologise for any unintended intrusion. |
| Copyright © European Parkinson's Disease Association | All rights reserved. |
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