Sep 10, 2018
Atrial fibrillation (AF) is an abnormal heart rhythm with rapid and irregular beating. It is estimated to increase the risk of stroke 3 to 5-fold and to be associated with around a quarter of all ischaemic strokes. Additionally, AF is associated with more severe strokes leading to higher mortality and disability.
With support from the BMS-Pfizer Alliance, The Economist Intelligence Unit (EIU), London, UK published a new sub-analysis that assessed how 11 EU countries (Belgium, France, Germany, Italy, the Netherlands, Norway, Russia, Spain, Sweden, Turkey and the United Kingdom) compare against European Society of Cardiology’s recommendations for stroke prevention and #AFib detection. This sub-analysis was published in the “Risk Management and Healthcare Policy” journal.
AF is often asymptomatic and screening is not routinely undertaken in Europe. Accurate information on its prevalence in the general population is therefore not widely available. Some European countries have undertaken screening studies to estimate the proportion of the population affected. They reported rates in the general population ranging from 1.3% (UK, Italy) to 3.9% (Greece), with rates being highly dependent on age. Less data is available from Central and Eastern European countries.
Due to Europe’s ageing population and AF’s strong association with age (0.7% in those aged 55-59 vs. 17.8% in those aged ≥85 years), the prevalence of AF is expected to rise. Using data from the community based Rotterdam Study and population projections from Eurostat, it was estimated that the number of adults over 55 with AF will more than double between 2010 and 2060 from 8.8 million to 17.9 million[117]. An Icelandic study projected the prevalence of AF to rise from 1.9% in 2008 to 3.5% in 2050. (Source: Burden of Stroke Report, 2017)
As stated in the Abstract of this sub-study, all 11 participating countries were found to have policies in place to manage general behavioral risk factors of noncommunicable diseases (NCD), but it was found that more needs to be done to address cardiovascular disease – specifically, stroke risk factors. Although ten of the countries in this study endorse the ESC cardiovascular clinical guidelines, implementation is lacking. Eight out of the 11 countries received the lowest score in regard to raising awareness around stroke, and 7 countries were found not to have a stroke registry. Among physicians surveyed in primary care it was reported that less than 30% of patients over 40 years old were screened for blood pressure, whereas even fewer were screened for atrial fibrillation; in 10 out of the 11 countries, less than 20% of patients over 65 years old were screened for atrial fibrillation.
The findings revealed opportunities for improvement in the primary prevention of stroke which should not be ignored, having in mind that the prevalence of AF is expected to rise significantly over the next few decades.
Sep 7, 2018
Following the publication of EPF’s Transparency Guidelines, European Patients Forum would like to invite you to join a webinar to discuss transparent advocacy in patient organisations.
Health advocacy and lobbying is at the heart of the work of many patient organisations (whether it is local, national or European). Their mission statement often includes promoting a political, regulatory, and societal environment that are more patient-centred.
This means that patient organisations engage in lobbying activities on a regular basis. They do so by contributing the specific perspective of patients and people with chronic conditions to legislative processes, but also by pushing for the recognition and for actions on topics that are not yet necessarily on the political agenda (proactive advocacy). Thanks to Vitor Teixeira from Transparency International, the EPF will share with you the benefits of transparency and advocacy as well as a few practical tips on how to enhance your transparency in advocacy activities.
Practical information
Date: Friday 14th September 2018
Time: 15.30-16.15 CEST
How to register?
Register via this link, by 12 September at the latest. Please note that you will need a strong internet connection to fully enjoy the webinar.
And if I can’t make it?
If you can’t make it at the time of the live webinar, no worries! The webinar will be recorded and made available on EPF website.
Aug 31, 2018
Death and illness caused by noncommunicable diseases bring suffering and heartache to millions of people worldwide every year – those who live with the diseases, as well as their families and friends. 70% of all deaths worldwide result from NCDs.
In light of the upcoming Week For Action on NCDs Activities & Comms within the ‘Enough.’ campaign, we used an opportunity to talk with Jelka Jansa, from the Stroke Support Organisation Slovenia. Jelka recently participated in a NCD Alliance workshop in Geneva and being an occupational therapist who works in an acute neurological hospital, she is very familiar with patient support organisations both locally and internationally, especially in the field of stroke.
What is ‘Week For Action on NCDs’ and when is it happening?
It takes place on the 3-9th September. As part of the Enough campaign, the NCD Alliance is encouraging the NCD community all over the world to observe a Global Week of Action on NCDs from the 3rd to 9th of September 2018 in the lead up to the UN HLM on NCDs which will take place later that month on the 27th September. The Global Week for Action on NCDs will catalyse activity among people who are engaged in the NCD movement everywhere, to initiate a transition from commitment to action on NCDs and we encourage you to get involved individually or through your country NCD alliances, in a way that works for you in your context, based on available resources, capacities and priorities.
This will be a global opportunity to talk to each other, to leaders, to media, to crowds, to the world about what works well and what needs to change to ensure a transition from commitment to tangible actions that not only yield reportable improvements in NCD targets and outcomes, but result in the improvement of health and lives of all people in all places.
The opportunities are endless. Possible activities include organising a meeting, street action, picnic, fun run, dance party, art competition or social media support. The week is your chance to do something achievable, appropriate, relevant and impactful where you live, but linked to a global movement. Saying ENOUGH is also a nice way of participating.
Objectives:
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Show solidarity and a strong united civil society movement to address NCDs globally
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Draw attention to the UN HLM on NCDs
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Mobilise around the ENOUGH campaign and emphasise that we all say ENOUGH. Our HEALTH, is our RIGHT, and we need action NOW.
The Global Week for Action will be led by NCD Alliance, with collaborative support of the WHO Civil Society Working Group on NCDs, partners, members, supporters and wider NCD civil society network.
The Guide for Planning your Week for Action on NCDs, Activities and Comms is available for free at this link. It includes useful tips and checklists to help in your planning over the coming three weeks. To complement the guide, you can also find a suite of editable graphics for social media (with English and Spanish versions) to help to promote the Global Week for Action on NCDs and support your activities here.
WHAT HAVE YOU HAD ENOUGH OF?
Share your views and make your own pledge to help stop preventable death and suffering ahead of the 2018 UN HLM on NCDs.
TELL THE WORLD
Aug 31, 2018
Brussels, 31st August 2018 – The eLearning Module 4 of the Stroke Support Organisation Faculty Tool (SSOFT) is published today at the following address www.ssoft.info.
In Module 4, using a combination of theory and practice, SSOFT demonstrates the impact of the individual and collective patient voice. Learners will develop an understanding for the role of the stroke patient and survivor in research and development of stroke guidelines; and how to argue for patient involvement and rights in the context of regulatory, ethical and advisory processes.
SSOFT’s fourth module focuses on what rights patients have and how the voice of the stroke survivor and their families can be used ethically to support SSOs causes and campaign.
The module is broken down in to five bite-size sections, which covers:
4.1 – Patient voice
4.2 – Patient voice in research
4.3 – Patient voice in guideline development
4.4 – Institutional processes impacting on the patient voice
4.5 – Patient’s rights
Stroke Support Organisations have been at the heart of this tool. For newer or smaller organisations, the information in the tool will provide knowledge that will help them build their capacities and grow. Larger organisations will be enabled to support their communities and other stroke professionals across Europe and add more voices to their movement/arguments for change.
This tool is also for anyone who is interested in knowing more about what an SSO is, how to start and develop one and how to make it sustainable.
For those interested in using this innovative eLearning platform we would encourage them to visit the SSOFT website www.ssoft.info
This online learning platform provides knowledge and training on how the creation of effective advocacy activities and campaigns to deliver positive change at a local and national level on stroke prevention, treatment and care. The eLearning platform will include six modules that provide information on:
About SSOFT
SSOFT is an innovative online eLearning advocacy tool being developed by Stroke Alliance for Europe (SAFE), in partnership with the European Stroke Organisation (ESO).
Module 1: Stroke Support Organisations (SSOs)
Module 2: Making Change Happen
Module 3: Use of Evidence
Module 4: Role of Patient Voice
Module 5: Health System Advocacy
Module 6: Public Advocacy
The modules and learning environment is accessible via the SSOFT website through a simple registration process. Visitors to the website can also learn more about SSOFT, SAFE and ESO, find their nearest SAFE Stroke Support Organisation (SSO) as well as hear from SAFE members about their experiences.
For more information, please send an email ssoft@safestroke.eu or visit www.ssoft.info
Acknowledgments
SAFE would like to take this opportunity to thank and acknowledge the contributions made by those who have helped in the development of SSOFT and Module 4.
Stroke Alliance for Europe Board, who have been involved at every stage of development of this module.
The Peer Reviewers for module 4:
• Stiftung Deutsche Schlaganfall-Hilfe (Dr Markus Wagner)
• Hellenic Alliance/Action for Stroke Support Organization (Dr Hariklia Proios)
• Macedonian Stroke Association (Dr Anita Arsovska & Dr Maja Bozinovska Smiceska)
• Norsk forening for slagrammede (Ms Grethe Lunde)
• Thessaloniki and Wiesbaden NRZ, Rehabilitation Center Germany (Dr Dimitris Artemis)
• Aristotle University, Greece (Dr Katerina Nicolaidis)
• Anagenissis Rehabilitation Center, Greece (Ms Eugenia Stamatiou)
Our members who have shared their experiences and knowledge in the video interviews used within the module:
• Chris Macey – The Irish Heart Foundation, R.Ireland
• Pnina Rosenzweig – Neeman Association for Stroke Survivors, Israel
• Markus Wagner – Stiftung Deutsche Schlaganfall-Hilfe, Germany
• Monique Lindhout – Hersenletsel, Netherlands
• Jon Barrick – Stroke Alliance for Europe (SAFE)
• Bjørn Magne Bakke – Norsk forening for slagrammede, Norway
Our member and partner organisations who have collaborated in the development of the module content:
• Aivoliitto
• Fundacja Udaru Mózgu
• STROKE-Riksförbundet
• World Stroke Organization
• European Stroke Organisation.
And all those who participated in the User Acceptance Testing of module 3.
We would also like to thank the project sponsor Bayer Healthcare who have supported this project through an education grant.
About SAFE
The Stroke Alliance for Europe (SAFE) a non-profit-making organisation formed in 2004. It is the voice of stroke patients in Europe, representing a range of patient groups from 30 European countries.
SAFE’s goal is to decrease the number of strokes in Europe by advocating for better prevention, access to adequate treatment, post-stroke care and rehabilitation.
For more information about SAFE, please visit www.safestroke.eu
Aug 28, 2018
The original information provided at Braincouncil.eu
In July this year, European Brain Council launched a statement “Counting down to zero: Towards a future with underfunded health research?” which calls on the European Commission, the European Parliament and the Council to increase the budget of the “Horizon Europe” programme to at least €120 billion. What is more, the statement calls on European decision-makers to redistribute the budget in order to ensure that more funding is allocated to the “health” cluster under Pillar II.
The proposal for “Horizon Europe”, published in June 2018, includes an overall budget of €94.1 billion in inflation-adjusted prices. Within this budget, roughly €7.7 billion is proposed to fund the “Health” cluster that is part of the pillar “Global Challenges and Industrial Competitiveness”.
EBC welcomes the increase of the overall draft budget but firmly believes that the proposed budget as it currently stands is insufficient to effectively address today’s societal challenges. The treatment of brain disorders alone is estimated to cost close to €800 billion annually[1], which makes adopting a robust 9th Framework Programme with a strong focus on accelerating health research of paramount importance. What is more, the proposed budget for the “Health” cluster confirms a steady decrease of funding over time and across Framework Programmes, as health was previously allocated 12% under the 7th Framework Programme, 10% under Horizon 2020 and now 8% in the Horizon Europe proposal.
“We are highly concerned about the budget of €7.7 billion provisionally allocated to the “health” cluster under
Pillar II. This amount is not commensurate with the total budget increase and will clearly be insufficient to
effectively address the societal challenges associated with health research. Moreover, this budget confirms a
steady decrease of funding over time and across Framework Programmes, as health was previously allocated
12% under the 7th Framework Programme, 10% under Horizon 2020 and now 8% in the Horizon Europe
proposal. For continued success in European research, we find it imperative that this downward trend is
stopped and reverted.”– says the statement.
The full statement can be accessed here.
EBC invites all organizations, operating at national and/or EU level, that are supportive of the call to join as co-signatory of the statement. Please contact the EBC office (info@braincouncil.eu or +32 (0)2 513 27 57) should you be interested in having the logo of your organization added to the list of signatories.
Aug 8, 2018
Solitaire™ With the Intention For Thrombectomy Plus Intravenous t-PA Versus DIRECT Solitaire™ Stent-retriever Thrombectomy in Acute Anterior Circulation Stroke (SWIFT DIRECT)
Background
The SWIFT DIRECT trial investigates the emergency treatment of patients with an acute ischaemic stroke. An ischaemic stroke is caused by the blockage of one or more blood vessels in the brain. A clot blocks the blood vessels and blood can no longer circulate. This results in an undersupply of blood and oxygen to the brain regions supplied by these vessels. If the under-supply lasts longer than a few minutes, there is a risk that nerve cells might die. An ischaemic cerebral infarction is a life-threatening situation.
For years, the only causal treatment was the administration of a clot-lysing drug called tissue plasminogen activator. The drug, however, may induce bleedings and is not sufficiently effective in patients with very large clots. In 2014, a new treatment, the so-called mechanical thrombectomy, has been established. With this therapy, nearly all types of large blood clots can directly be removed from the vessel using a specialized catheter. Trials have shown that patients treated with tissue plasminogen activator and mechanical thrombectomy have better outcomes than patients treated with tissue plasminogen activator only. Hence, the current standard treatment in patients with large clots is administration of tissue plasminogen activator followed by mechanical thrombectomy.
As administration of tissue plasminogen activator may also harm the patient and is not effective in patients with large clots, we want to investigate how potent direct mechanical thrombectomy (without prior administration of tissue plasminogen activator) is. The purpose of this trial is thus to compare direct removal of the clot with mechanical thrombectomy versus tissue plasminogen activator administration followed by removal of the clot with mechanical thrombectomy. Only patients with large clots and direct access to mechanical thrombectomy can be included in the trial.
We are conducting this trial to improve the emergency treatment for affected patients with an acute ischaemic stroke. This project is organised by the Neuro Clinical Trial Unit at the University of Bern, Switzerland and will be carried out at several hospitals in Europe and Canada.
What does it mean for patients to participate in this clinical trial?
Trial participants will be assigned by chance to one of two groups (half of the patients will be in each group). In the ‘treatment group’ the blood clot is removed directly with mechanical thrombectomy. In the ‘standard group’, participants first receive blood clot-dissolving medication followed by mechanical thrombectomy to remove the clot.
Both treatment options are commonly used standard treatments. The choice between the two is part of clinical routine at the hospital and lies upon the judgement of the treating physician. Except for the phone interview 90 days after the infarction incident, all examinations are part of standard treatment routine independent from the trial.
General information about the trial
| Study type: |
Multicenter, prospective, randomized, open label, blinded endpoint (PROBE) trial |
| Trial start and end: |
October 2017 to December 2020 |
| Sponsor-Investigators: |
Prof. Dr. med. Urs Fischer, Neurology, and
Prof. Dr. med. Jan Gralla, Neuroradiology,
University Hospital Bern, Inselspital, Switzerland |
| Total number of participants: |
404 patients |
| Trial duration for each participant: |
3 months |
| Participating countries: |
Austria, Canada, Finland, France, Germany, Spain and Switzerland |
| Financial support: |
Medtronic (Minneapolis, USA) |
| Trial registration: |
www.clinicaltrials.gov, No.: NCT03192332 |
Please visit the website www.swift-direct.com for further information.
This trial is endorsed by SAFE.
