Dr Inna Lutsenko World Conference on Research Integrity 2019 at Hong Kong University

Excerpts from the stroke support organization main session at the 2018 World Stroke Congress are now live on the World Stroke Academy

There was significant stroke support organization (SSO) representation and content at the 2018 World Stroke Congress in Montreal, and for the first time the SSO main session was recorded and excerpts are now available on the World Stroke Academy. 

There was a range of SSO activity throughout the World Stroke Congress. The Testimonial Exhibition and e book included 145 stories of people affected by stroke from 28 countries. During the Congress the posters were placed by the list of Congress participants, and many delegates commented that it was a reminder that people affected by stroke across the world are a fundamental part of the World Stroke Congress – ‘the reason we are here’.

The SSO main congress session opened with ‘The power of SSOs as change agents to improve stroke systems of care’, chaired by Heart and Stroke Canada. The first presentation is on the Canadian experience of the building blocks for stroke systems change. The presentation on Heart and Stroke’s indigenous health strategy highlights that bringing together different knowledge systems can generate innovation. The talk on driving systems change in a complex political environment, stresses the importance of keeping a focus on patient and caregivers’ needs and ensuring transparency.

The last talk in this session is by Sheila Farrell, a Canadian stroke survivor. Sheila emphasizes the gaps in long term stroke support for survivors, and the importance of listening to survivors’ experiences to understand the reality of life after stroke, and to help build a better roadmap for future stroke survivors. She calls for the loop to be closed between scientific research, the disciplines of the healthcare system, the community and the patient.  

The next SSO session focuses on some of the less talked about effects of stroke. We hear about stroke specific end of life issues, including communication difficulties and the lack of discussion on end of life planning, as stroke is often a ‘bolt from the blue’. The relationships and intimacy talk highlights the fear and concern often felt by stroke survivors in relation to these issues, and the need for training to build the confidence of health care professionals in discussing relationships and sexuality.  The third talk in this session looks at psychological changes as a result of stroke, and underlines the importance of sharing stroke survivor testimonials to highlight the psychological impact of stroke, to challenge stigma and to encourage stroke survivors to identify with others; building peer support. The conclusion of this session is that there is a crucial role for SSOs across all these issues: to advocate for better support, training and research; to identify and meet needs and gaps through their stroke support activities; and to develop resources.

Thank you to all the SSO speakers and to the congress delegates who engaged so positively with the important work that SSOs are doing across the world. 

If you are a member of WSO you can access the SSO content here https://world-stroke-academy.org/wso/2018/montreal/261548

Report from the ‘Brain diseases - from bench to bedside’ conference, Moscow April 12-13, 2018.

The meeting, organized by Professors Eugene Gusev and Alla Guekht, focused on the recent developments in translational research and treatment innovations in cerebrovascular diseases, epilepsy, cognitive impairment and dementia, depression, demyelinating diseases and others. It was held at the Buyanov City Clinical hospital, and was organised in partnership with the following institutions: Ministry of Health of The Russian Federation, Russian Academy of Sciences, Moscow Healthcare Department, Pirogov Russian National Research Medical University, World Stroke Organization, European Stroke  Organization, World Federation of Neurology, International League Against Epilepsy, European Federation of Neurorehabilitation, All-Russian Society of Neurologists, Moscow Research and Clinical Center for Neuropsychiatry. 

The Conference Faculty had a high-level meeting with Professor V. Skvortsova, Minister of Health for the Russian Federation, to discuss the management of stroke and brain disorders and highlight the priority this should be given both internationally and within the Russian Federation.  An action plan on collaborative strategy in brain diseases has been discussed.

The conference proved very popular and over 700 delegates from 42 cities of the Russian Federation attended with additional registrants from Belarus, Georgia, Kazakhstan, Tajikistan, Ukraine and Uzbekistan. The conference attracted a high level of media coverage and both Professors P. Sandercock & V. Caso gave video interviews for local media organisations. 

The stroke session began with an update on ‘Controversies in thrombolysis’ by P.Sandercock, who highlighted the importance of not withholding thrombolysis to patients with ischaemic stroke purely on the basis of age over 80.  V. Caso gave a powerful talk on ‘Life after stroke in women’. She highlighted the particularities of stroke management during pregnancy and demonstrated how gender inequality results in adverse effects in women’s healthcare in general and in stroke outcome in particular. M. Hilz gave a detailed overview of autonomic dysfunction in diseases requiring neurological intensive medicine. V. Parfenov covered management of patients after stroke, highlighting the value of lifestyle changes (quitting smoking, increasing physical activity and fresh fruit and vegetable consumption) and antithrombotic therapy with aspirin after ischaemic events. I. Koltunov, N.Pechatnikova and V. Kakaulina presented their work on Cerebrovascular diseases associated with genetic metabolic disorders and demonstrated the program of genetic screening for rare diseases, supported by the Moscow government. A. Pryamikov, A.Mironkov and O. Sazhina, doctors from the Regional Stroke Center in the host hospital, closed the session with an interesting talk on their experience on carotid endarterectomy and internal carotid artery stenting in acute stroke. 

The clinical stroke-focused session was followed by a translational science session, which covered a broader range of topics.  I. Blumke reported work from The European Epilepsy Brain Bank Consortium: 25 years of interdisciplinary experience with epilepsy surgery in 9579 children and adults, L. Østergaard presented novel data on the role of capillary pathways in stroke and cognitive decline, N. Gulyaeva highlighted how distant hippocampal damage in brain disorders may be related to corticoid-mediated mechanisms. A. Shpak spoke on neurotrophic factors in neuro-ophthalmology, showing their important role in glaucoma as the model of neurodegenerative diseases.  D. Muresanu gave a talk titled ‘From neurobiology to evidence based medicine: concepts in neurorehabilitation after stroke’.  

The session on cognitive and affective disorders was opened by the lecture by M.Feedman focusing on the diagnostic and treatment challenges of frontotemporal dementia. R. Akzhigitov and co-authors gave an overview on depression in neurological diseases, presenting the huge experience of the Moscow Research and Clinical Center for Neuropsychiatry with the very effective programs of multidisciplinary management of depressions and cognitive impairment, including post-stroke.

The session on the following day was dedicated to epilepsy. V.Krylov and I.Trifonov presented the results of the epilepsy surgery program, which is successfully developing in Moscow and other cities of the Russian Federation. S. Wiebe gave a thorough overview of the outcomes of epilepsy surgery. He emphasized that the novel way of conceptualizing surgical outcomes highlights the importance of longitudinal data. N.Specchio described special issues of epilepsy surgery in children. A.Hauser demonstrate how TBI and post-traumatic epilepsy represent a substantial societal burden. He reviewed the major risk factors and stated that studying the predictors of epilepsy after TBI should become one of the priorities. The successes and challenges in the implementation of the 68th WHA resolution on epilepsy have been presented by E.Gusev and A.Guekht. They demonstrated that epilepsy is comorbid to stroke and other major noncommunicable diseases, dramatically increasing their severity and mortality. The last session was opened by E.Beghi with the talk describing the mechanisms and predictors of falls in neurological diseases, including stroke, Parkinson’s disease, multiple sclerosis and others. He stressed that stroke can be the cause of balance disorders due to impaired ability to produce fast, accurate and coordinated muscular patterns. Several interesting talks were presented by Russian colleagues on multiple sclerosis, including the burden of multiple sclerosis (V. Mkrtchyan, N. Pavlov) and therapeutic approaches (N. Khachanova and N. Arzymanian). The novel techniques and experience of neurostimulation in gait disorders in multiple sclerosis patients were presented by the neurosurgery team of the Buyanov City Clinical hospital (S.Asratyan). The significant part of the session was dedicated to management of ALS, presented by members of the Russian and foreign faculty. 

The interactive video session concluded the conference with presentation of interesting cases in different aspects of neurology and with a lot of discussion.

On the next day, the international faculty and the leading Russian specialists on brain diseases visited the Moscow Research and Clinical Centre for Neuropsychiatry of the Healthcare Department of Moscow, one of the leading institutions for management of patients with post-stroke cognitive impairment, depression and anxiety, suicidal ideations, epilepsy and other brain diseases. It was the second meeting of the international scientific advisory board of the Research and Clinical Centre, formed in October 2017 during the World Stroke Day Congress in Moscow. 

The meeting started with an overview of the >100 year history of the center, presented by its director A. Guekht. The scientific achievements, patient management and educational activity of the center, as well as the state of the art facilities for diagnostics and research were quite impressive. 

Professor N. Gulyaeva (Institute of Higher Nervous Activity, RAS) presented the results of studies in translational neuroscience. Then, completed and ongoing research projects in post-stroke cognitive impairment, epilepsy, depression and suicide, and autonomic disorders were presented by the specialists of the Center and of collaborative institutions (Pirogov Russian National Research Medical University, A.I. Yevdokimov Moscow State University of Medicine and Dentistry, Serbsky State Scientific Center for Social and Forensic Psychiatry, Institute of Higher Nervous Activity and Neurophysiology of RAS, N.V.Sklifosovsky Research Institute of Emergency Medicine and Buyanov City Clinical Hospital). The projects were extensively discussed by the faculty, and plans for international publications and new projects had been developed. The true highlights of the meeting was a series of seminars in stroke and other brain diseases led by the eminent members of the international faculty. These seminars were of high educational value for the doctors and researchers from Moscow clinics.

The conference closed with warm thanks from the organising committee to the supporting organisations, the conference faculty and conference participants for their efforts in improving the outcomes for people with stroke and brain disorders. The conference strengthens the international collaborative efforts to tackle these disorders, which place such a burden on patients, society and health systems.

Peter Sandercock

Testimonial Exhibition at the World Stroke Congress October 2018

We want to make sure that the voices of people affected by stroke are heard throughout the

Congress in an exhibition of stroke survivor, family and caregiver testimonials.

The 11th World Stroke Congress will focus on the latest developments in stroke prevention, acute management and restorative care after stroke. Reducing the burden of stroke on people with lived experience and their family and care givers drives everything the World Stroke Organization does. 

In previous years the visibility of people with lived experience of stroke has been promoted through art exhibitions, both physical and online, and a hobbies ebook. 

In 2018 our exhibition will focus on the testimonials of people with lived experience of stroke. 

We are calling on both stroke support organizations to gather testimonials from the people they work with, and on individuals to share their own testimonials, with the following brief:

150 words and include a digital portrait photo.

• Start with your name, nationality and your previous or current work or volunteer role

• When did you have your stroke and at what age?

• How did medical and allied professionals help you in your treatment and care?  

• Who and what has helped in your recovery?

• Is there anyone you would like to thank?

Please send to Sarah Belson sarah.belson@stroke.org.uk by 30^th April 2018.

The Canadian Stroke Congress 2017: shaping the future direction of stroke

 Hundreds of stroke experts from Canada and around the world converged in Calgary, Canada in September for the Canadian Stroke Congress. Co-hosted by Heart & Stroke and the Canadian Stroke Consortium, the Congress gave a first-hand look at emerging research findings and the best-practices which have true potential to become tomorrow’s prevention and treatment strategies. This unique opportunity to meet and hear from an exceptional line-up of national and international leaders helps set the future directions for how we think about and treat stroke.

Highlights from this year include:

Geneviève

Stroke and pregnancy: The last thing you expect to happen when you’re pregnant is to have a stroke. A new Heart & Stroke study featured at the Congress revealed that stroke in women during pregnancy is three times higher than stroke in non-pregnant woman of the same age. The study’s team also released a medical consensus statement with management considerations for healthcare professionals in treating woman with stroke prior to, during, and right after pregnancy. Geneviève was six months pregnant when she had a stroke. Read her story HERE

Improving stroke treatment in Israel: from public awareness to political action

How Neeman Stroke Survivors campaigned to improve stroke treatment and outcomes

1. What are the key issues around stroke treatment in Israel? 

Key issues in Israel are lack of public awareness of risk factors and early warning signs of an oncoming stroke to ensure speedy arrival by ambulance to emergency stroke care. We also have an absence of stroke units in many areas throughout the country, developing more comprehensive access to these units would help us to deliver maximal medical care in the shortest possible time. Within stroke care centres we also have insufficient trained professionals to perform catheterization – a procedure that can remove blood clots and make a big difference to patient recovery. At present there are today only 8 specialists in Israel, which is a completely inadequate number to fulfil the needs of a population over 8 million. Once patients are out of acute care, we also have a lack of rehabilitation centers and rehabilitation beds and not enough professionally trained allied health rehabilitation personnel.

 2. Why did you choose this particular approach to raise awareness of the treatment needs of people having a stroke? 

Our strategy was to operate in two parallel directions: one was by using various media, especially a TV campaign with a large budget to influence the public, and the other was to influence decision-makers in the Ministry of Health, including the Health Minister and senior echelon from his office, by publicly signing the Israeli National Stroke Policy Declaration for Lowering Stroke Morbidity, at a large, official event. This two-pronged, multi media coverage was expected to draw interest of the public to stroke in general and to the feasibility of identifying early signs as well as influencing key decision-makers to fund the national program for long term, ongoing stroke treatment.

3. What were the most successful parts of the campaign? 

The integration between the various activities worked particularly well. We were able to generate a highly successful, generously funded film sponsored by the Health Ministry, which went viral, as well becoming as the subject of talk shows and popular news columns. The National Conference was attended by top level professionals from the fields of stroke prevention, treatment and rehabilitation, including the acting president of the WSO (by video) and in person participation of the president elect of the WSO. Our end result - a commitment was gained from the Minister of Health to continue in the future to prevent stroke and thus ensure this would not be a temporary campaign.

4. Can you describe the immediate impact of the campaign a) on the public and b) on healthcare policy makers? 

In the first stage we know of an increased number of persons who came to emergency care with early signs of a stroke and whose lives were saved. In addition, we received moving phone calls from the families who personally wished to thank us for saving their relatives from stroke. The many requests from the media for interviews from stroke survivors and Neeman representatives, together with increased utilization of social media all displayed a significant increase of public awareness to early signs of a stroke. In addition, the Health Ministry decided to set up a special working team to identify the issues involved in rehabilitating survivors of stroke and to submit recommendations, a subject that has been neglected up until now.

 5. What does it mean to you to receive an award from the World Stroke Campaign? 

It's a feeling of great satisfaction from the esteem granted to our persistent efforts over 20 years and the recognition of the effectiveness of the selected strategy chosen in our course of action. Winning the award also raises the prestige of the activities of NGOs in health care in general and particularly those which represent stroke survivors and their families, as well the many professional advisors and colleagues who assisted us. It is indeed a great honor!