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JULY 2010

EPDAUPDATE

WELCOME

e-newsletter JULY 2010

Welcome to the new EPDA Update, a bimonthly newsletter for the EPDA member organisations, Parkinson’s-specific healthcare professionals, the treatment industry and anyone interested in up-to-date and topical information on the disease. We welcome your feedback, so please write to us at: info@epda.eu.com. Don't miss the next newsletter, which goes live on 18 October 2010.

READ ALL ABOUT IT!
Move for Change Survey Life with parkinson's - Non-motor symptoms EPDA Plus multilingual
JOIN THE EPDA'S CAMPAIGN FOR CHANGE NEW EPDA
'LIFE WITH PARKINSON'S' LAUNCH		 EPDA PLUS NOW IN FIVE LANGUAGES
The EPDA's Move for Change online survey – available in 24 languages – has now been live for three months. However, there is still plenty of time left for the EPDA members to get involved and join the campaign. “Our members' answers are invaluable in helping the EPDA understand the level of care that people with Parkinson’s and their families receive throughout Europe,” said EPDA president Knut-Johan Onarheim. “So please promote widely if you and your membership want to play a part in making important changes to PWPs' quality of life. If you have not yet taken part, please do so now.” The EPDA's new publication Life with Parkinson’s – Non-motor symptoms is being launched at the World Parkinson Congress in Glasgow on Wednesday 29 September, a few days after the EPDA General Assembly. The publication focuses on the complexity of Parkinson’s and the disease's associated non-motor symptoms that need to be managed on a daily basis, which includes pain, incontinence, constipation, sleep disturbances, fatigue, anxiety and depression. If you would like a copy, please contact info@epda.eu.com. The EPDA's flagship magazine EPDA Plus is now available online in four new languages: French German, Italian and Spanish. Introduced following the last issue (Issue 13, Spring 2010), the newly translated issues have been a great hit. "It's fantastic,” said Lucilla Bossi from Parkinson Italia. “No more long hours spent translating articles. It's a great step towards a truly united Parkinson's Europe.” Valeria Germini was equally enthusiastic. “It's wonderful to read EPDA Plus in Italian,” she said. “Thank you for your efforts to reach more people.” Don’t forget to look out for future translated EPDA Plus issues by visiting www.epda.eu.com/epdaplus.
www.epda.eu.com EPDA WEBSITE GROWING AGAIN
New research papers have been added to the EPDA's Parkinson's resources website. With the help from Merck Serono, the EPDA is now able to provide online abstracts of published research papers from well-known and highly respected publications such as the Journal of Neurology, the Journal of Neuroscience and many more. See www.epda.eu.com/research-papers for more.
EPDA general Assembly Working in Partnership We want your stories.
ONLINE AND
ON TIME		 PARTNERSHIP PAYS FOR EPDA TOIL AND TRAVEL?
The EPDA's Annual General Assembly and Learning in Partnership Workshop is taking place in Glasgow, Scotland, at the Glasgow Marriott Hotel on Sunday 26 September. If you would like to attend, please register online as soon as possible by visiting www.epda.eu.com/register-ga. You can view the event's agenda here too. The EPDA held its annual Working in Partnership meeting with the treatment industry in London in May. The event – a mix of presentations and workshops – was a huge success and was very helpful to all who participated. To see a list of attendees, papers and presentations, visit www.epda.eu.com/about-us/organisation/working-in-partnership/2010. Travelling around Europe with Parkinson's: how easy is it? The EPDA would like to hear the answer to that question from people with Parkinson’s that have experienced difficulties or lack of understanding at major European airports. Please email us at info@epda.eu.com if you have any stories to tell.
EPDA'S YOUTUBE HITTING IT OFF EPDA YouTube channel
The EPDA’s YouTube channel (www.youtube.com/theEPDA) is growing and receiving great reviews and record numbers of hits. “Great channel and great work! Thanks so much, congratulations,” said Porahi from Argentina. “Congratulations on creating this wonderful channel; it makes great value to the EP,” said Gruparfa from Chile. The EPDA welcomes any recommendations of Parkinson's-related videos that you would like to include on the website, so please contact info@epda.eu.com.
Psychosocial fActors Relevant to brAin DISorders in Europe Active Citzenship Network Pooled databases for Parkinson's
PARADISE CAN EXIST FOR SOME A CALL TO ARMS (AND HANDS) A NEW ALLIANCE
A new European Commission-funded 'co-ordinated action' has been launched to create a “comprehensive, cross-cutting and horizontal epidemiology that can measure psychosocial difficulties associated with brain disorders”. PARADISE (Psychosocial fActors Relevant to brAin DISorders in Europe) was launched in Germany in January and will co-ordinate existing expertise in eight European countries to produce literature reviews, data collection and analysis regarding nine brain disorders: dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson’s disease, schizophrenia, stroke and substance use disorders. Visit www.paradiseproject.eu for a detailed overview of the project. The Active Citzenship Network is calling for widespread help to make its European Patients’ Rights Day official. On 6 May, a written declaration for the event was presented in the European Parliament and has been tabled. The Network now needs 368 MEP signatures – more than half the total number of MEPs – and is urging EU member state patient organisations to encourage their MEPs to sign the declaration before the 17 September closing date. If successful then patients' rights will become an official issue on the European Parliament agenda. The more signatures that are collected, the stronger the political message of the declaration will be. A new effort is under way to learn something from previous failures by drug makers in attempting to find treatments for neurological diseases. A group of major pharmaceutical companies will share pooled data from failed clinical trials to try to understand what is going wrong in the studies and what can be done to improve drug development. In the first wave, data from 4,000 patients across 11 failed Alzheimer's drug clinical trials will be publicly available from June. The coalition aims to create similar pooled databases for Parkinson's and tuberculosis.
Shocking statistics on neurological disorders STARK WARNING FROM ENS
The latest statistics relating to neurological diseases are shocking, according to the European Neurological Society (ENS). “Diseases of the nervous system and the brain occur more frequently than cancer, and according to recent calculations, these diseases represent a burden of €386bn a year on European economies,” said Professor Gérard Said, ENS president. Furthermore, he said, around 50 million people in the EU suffer one or more neurological disease, according to figures published by the WHO in its Neurology Atlas, and this incidence is on the rise. Meanwhile, the European Brain Council estimates a 20% increase in these diseases in the coming years, while the number of people suffering dementia or Parkinson's alone is expected to double during this period.
Coffee cuts the risk of Parkinson's Losing the sense of smell could be an early sign of Parkinson's Exposure to insecticides
COFFEE CONUNDRUM FOLLOWING YOUR NOSE A NEW PEST FOR PARKINSON'S
A recent review of the available evidence shows that regularly drinking coffee – around two to three cups a day – cuts the risk of Parkinson's by as much as a quarter. Although the protective effects of coffee have been suggested many times, previous studies have proved conflicting. The latest research, from Portugal, looked at 26 published studies into the link and found a 25% cut in the chance of developing the disease among coffee drinkers (this fell to 14% when looking only at female coffee drinkers). There was also a direct link between the amount of coffee drunk and the extent of the protective effect conferred. The findings were published in the Journal of Alzheimer’s Disease. Scientists have warned that losing the sense of smell could be an early sign of Parkinson's. Dr Silke Nuber, from the University of Tubingen in Germany, has suggested that a fast, simple and non-invasive smelling test may be an important tool to screen people who are likely to develop the disease. Nuber also said that her team's research could help in the development of treatments for the early stages of the disease. Her team have been studying transgenic mice with high levels of human alpha-synuclein, a protein known to be crucial in the development of Parkinson's. From this, it is hoped scientists can look at the reversibility of neuropathological alterations. Researchers have found that genetic mutations and exposure to insecticides in workplaces can interact to increase the risk of Parkinson's, especially in men. "In most cases, the etiology of Parkinson's is likely to be multifactorial, and environmental factors as well as their interaction with susceptibility genes are considered to contribute to the disease," said the authors of the report. "These findings support the hypothesis of gene x pesticide interactions in Parkinson's," they wrote. The findings were published in the June issue of Archives of Neurology.
Stem cell research US STATE PLOUGHS ON WITH MILLIONS IN STEM CELL FUNDING
The US state of Connecticut has awarded nearly $10m in grants to fund stem cell research at Yale University and the University of Connecticut. The grants, which are the fourth round of state stem cell funding in Connecticut, will fund 22 projects that span areas such as the role of stem cells in understanding or treating Huntington's disease, leukemia, Parkinson's and osteoarthritis. The grants come from a $100m state fund for stem cell research that was established in 2005 when federal funding for research using human embryonic stem cells was restricted.
  THERE IS NO STEMMING THE FLOW
  The biggest names in stem cell research met in San Francisco in June for a global conference that focused on the latest science, but also on how experts should apply it to practical treatments for human patients. Approximately 4,000 scientists attended the event, which focused on potential therapies for treating Parkinson's or epilepsy among other conditions. The conference is the first major meeting since the California Institute for Regenerative Medicine issued more than $200m in grants last year. The grants, which ranged from $5m to $20m, were given with the explicit understanding that scientists must be ready for human trials within four years.
Phase III trials New data from its ongoing trial of gene therapy ProSavin showed continued benefits after two years Encouraging data from preclinical studies
NEW EVIDENCE FOR SAFINAMIDE THERAPY UK BIOTECHS SEE PROGRESS IN THE LAB ADDEX DRUG COMPLETES PHASE I
Treatment company Merck Serono and its partner Newron Pharmaceuticals S.p.A have presented new evidence on the safinamide therapy at the Movement Disorder Society's international congress on Parkinson's and movement disorders in Argentina in June. Safinamide is an investigational oral therapy that is currently being assessed in Phase III trials as an add-on treatment to dopamine agonist or levodopa in early- to late-stage Parkinson's. "The results presented will... improve the understanding of the mechanism and action of safinamide," said Bernhard Kirschbaum, Merck Serono's head of global research and development. Further news is expected later in the year.

 

 British biotechs Phytopharm and Oxford BioMedica both reported progress in the development of their Parkinson's drugs in June. Phytopharm said it had received US approval to begin Phase II clinical trials of Cogane, its leading Parkinson's drug, which hopes to reverse some types of brain function degeneration. Chief executive Sandy Morrison expects patient enrolment to begin in late 2010, although definitive results were about two years away. Oxford BioMedica, meanwhile, said new data from its ongoing trial of gene therapy ProSavin showed continued benefits after two years, with two out of three patients showing a 30% better motor function. Allosteric modulation company Addex Pharmaceuticals have announced encouraging data from preclinical studies demonstrating the anti-Parkinson's effects of ADX48621, a novel drug candidate that has completed three Phase I clinical trials. Addex previously disclosed that ADX48621 was effective in its testing and had achieved satisfactory pharmacokinetics, safety and tolerability in three separate Phase I clinical trials in a total of 130 healthy volunteers, including older subjects.
Greater improvement in early morning motor symptoms and sleep quality Clinical trial European marketing approval
GOOD RESULTS FOR RECOVER US MEDICAL COLLABORATION BOEHRINGER BOOST
New data has showed that Neupro® (rotigotine transdermal system) provides significantly greater improvement in people with Parkinson's (PWPs) early morning motor symptoms and sleep quality, compared with placebo. This is according to the RECOVER study – a multicentre, multinational, double-blind, placebo-controlled study designed to assess the effects of rotigotine. "Sleeping without being restless, uncomfortable or immobile may be just as important to PWPs, as being able to move around during the day," said a spokesperson. "Our findings show rotigotine was an effective treatment option for PWPs for both motor and non-motor symptoms.” Pharmaceautical firm QR Pharma and the US-based Massachusetts General Hospital have entered into a collaborative research agreement to work on a treatment for Parkinson’s. QR Pharma is developing its lead compound Posiphen as a potential treatment for Alzheimer’s. Researchers at Massachusetts General, however, found the compound also inhibits a-Synuclein, a protein associated with Parkinson’s. “To further explore the mechanism, we will take this observation a step further and explore Posiphen’s effect in a mouse model of Parkinson’s and then proceed to clinical trials,” said Dr Catherine Cahill, a Harvard faculty member at Massachusetts General. Pharmaceutical firm Boehringer Ingelheim has been granted European marketing approval for two new dosages of its Mirapexin® / Sifrol® tablet treatment for Parkinson's. The two new tablet strengths are 2.25mg and 3.75mg and have been designed to allow patients to take only one tablet per day, therefore making the treatment regime more convenient. The treatment has been approved in Europe as a thrice-daily treatment for early and advanced idiopathic Parkinson's since October 2009; the new formulations have demonstrated similar safety and efficacy profiles to the previous specifications.
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