The European Brain Council is pleased to invite you to register for the digital event “Best practices for patient safety: An EU-wide view on the use of medicines off-label” to be held virtually on 30 November 2021 at 14:30 – 16:00 CET.

In 2016, the Declaration for Good Off-Label Use Practice was launched, supported by a coalition of European organisations dedicated to ensuring that high standards of patient care are upheld and that progress in medical research and innovation is achieved. The GOLUP Declaration recommends that off-label use of medicinal products should only occur if certain criteria, drawn together by independent experts, are met.

Now it becomes necessary also to take action at national level. On the one hand to actively involve national organisations and stakeholders working at local level, allowing for a wider dissemination of the declaration. On the other hand, to allow an exchange of ideas and experience among local actors, to understand which paths to take in individual member states and to allow a continuous exchange of ideas and information.

This event follows the workshop on Patient safety and informed consent: The importance of good off-label use practices held on 17 June 2021. The purpose of this new digital event is to bring together patients, clinicians and policy makers to ensure greater awareness of the use of medicines off-label through the exchange of ideas and best practices from different European countries.

On the occasion of the approaching World Multiple Sclerosis Day (30 May 2021), the European Brain Council is excited to announce the release of its new policy paper, “RETHINKING MS in times of COVID-19”. This new paper is part of the main report “RETHINKING MS in Europe”, a research-driven project offering tangible policy changes to improve the lives of people living with MS across Europe, building on the 2017 Value of Treatment report from the European Brain Council.

About multiple sclerosis (MS)

Multiple sclerosis is a progressive disease of the central nervous system where an immune response destroys brain, optic nerve and spinal cord tissue, leading to irreversible motor disability and cognitive impairment over time. Typically, diagnosis occurs between the ages of 20 and 40, greatly impacting a person’s career, income and family life. Affecting over 1.1 million people across Europe, MS brings with it considerable costs to health and social welfare systems, as well as the wider economy in terms of decreased productivity from both people with MS and their carers.

There is currently no cure for MS and management focuses on timely diagnosis, disease-modifying therapies (DMTs), symptomatic therapies, rehabilitation and social care. Personalising and optimising each of these components can help people adapt to life with MS. However, suitable pharmacological therapies are not available to treat all symptoms, very often interrelated, and healthcare professionals may not be adequately equipped to fully support people outside of clinical settings, placing added importance on rehabilitation and social care to support daily living.

RETHINKING MS in times of COVID-19

Due to its complexity and variability of symptoms, MS is generally difficult to treat and handle. Include a health emergency such as the COVID-19 pandemic, which has significantly impacted every sphere of society, and the repercussions have been particularly severe for people living with chronic conditions such as MS. We have witnessed the concerning shift in triage guidelines regarding treatment prioritisation in an emergency, which saw treatment for people living with chronic conditions deprioritised.

How did people living with MS manage to continue receiving care despite this decreased prioritisation of their treatment plans? What were the challenges people with MS experienced during the coronavirus pandemic and what lessons can be learned from them?

The objective of this new chapter, ″RETHINKING MS in times of COVID-19″, is to provide concrete and tangible testimonies from relevant stakeholders – clinicians, MS patients, patient advocates, pharma representatives – impacted by the disruption in care, which proved both an obstacle and an accelerator for the implementation of good practices.

We highlight how the lives of people living with MS and their families have been affected by COVID-19. In addition to providing a voice to those side-lined by the pandemic response, the gathered testimonies shed light on the need to rethink MS and MS care in terms of coordination, integration and prioritisation in order to ensure optimal care for people living with MS in Europe. Our aim is to contribute to continued awareness raising of MS at EU policy level as well as to feed into the current European policy debate on the direct and indirect consequences arising from the COVID-19 pandemic and encourage stakeholder engagement in EU health policy making.

Visit the virtual exhibition "Living with MS during COVID-19: A case for rethinking MS in the EU"

Through this EBC's unique virtual exhibition, you will be able to view portraits of people supporting EBC's RETHINKING MS call. The portraits feature people living with MS, clinicians, care givers, policymakers and industry representatives who want to make a difference in how MS care and treatment are delivered in Europe. While you navigate the exhibition, you will also come across videos and infographics showcasing the critical need for improved, patient-centred treatment. 

The European Brain Council is pleased to invite you to register for the digital event “Patient safety and informed consent: The importance of good off-label use practices” to be held virtually on 17 June 2021 at 14:30 – 16:00CET. The event is co-organised with EUCOPE.

In 2016, the Declaration for Good Off-Label Use Practice was launched, supported by a coalition of European organisations dedicated to ensuring that high standards of patient care are upheld and that progress in medical research and innovation is achieved. The GOLUP Declaration recommends that off-label use of medicinal products should only occur if certain criteria, drawn together by independent experts, are met.

Five years later, the time has come to take a step forward, to look back at what has been achieved and to prepare for future developments. It becomes necessary not only to take an EU-wide view of the use of off-label medicines but also to take action at the national level.

The purpose of this event is to allow an exchange of ideas and experience among stakeholders and local actors, to understand which paths to take in individual Member States and to allow a continuous exchange of ideas and information on the off-label use of medicines.

The European Brain Council (EBC) is pleased to invite you to register & attend the digital event “Brain and machine: Improving MS care in a digital age”, to be held virtually on 27 May 2021 at 11:00 CET. The event is supported by Biogen, EBC and EU40.

The rapid development of COVID-19 vaccines is perhaps the clearest example of cumulative medical innovationㅡand its undisputed power to transform lives. But scientific innovation has not been limited to the race for immunity. From telemedicine and portable diagnostics to digital therapeutics and blockchain, digital technologies are reshaping health-care delivery―and could play a transformative role in the future.

This is nowhere truer than with multiple sclerosis (MS), a neurological condition for which there is currently no cure. From disease-modifying treatments to improved tools for monitoring disease activity, significant progress has been made in improving the quality of life of people affected by MS. Yet there is still a long way to go to better understand and respond to the disease. Digital products such as remote-monitoring tools and wearable devices and sensors offer the potential to deliver personalised and improved care to those affected by MS. But accelerating the pace of innovation requires effective policies and sufficient investment for research. Above all, the needs of patients must be at the forefront, with open dialogue between policymakers, industry leaders and health professionals.

This digital event will convene biotechnology leaders, policymakers, medical professionals, advocacy groups and patient advocates to examine how the digital revolution is transforming health-care delivery. In the approach to World MS Day, recognized on 30 May 2021, the event will take a focused look at the progress that has been made in treating MS, and will examine how to accelerate further advances.

After years of work, the outcomes of the MULTI-ACT project will be presented at the Final Conference, “The MULTI-ACT model: the path forward for participatory governance in health research and innovation”, to be held virtually on 23 March 2021 at 14:00-17:00.

The EU-funded MULTI-ACT project aims to increase the impact of health research on people with brain diseases. It has worked to create and implement a new model allowing for the effective cooperation of all relevant stakeholders, which will be applicable in defining the scope of health research as well as new metrics for the evaluation of its results. The MULTI-ACT project has worked with patients and patient organizations, academics, private and public stakeholders to develop brand new tools to assess the value of research.

Among these tools, the consortium has produced a governance model, a roadmap for patient engagement and impact indicators along five dimensions to foster stakeholder engagement in health research and innovation, which will be presented during the conference. Furthermore, the MULTI-ACT online toolbox will be presented and available for organisations to conduct health research with a multi-stakeholder and co-accountable approach.

EBC has been involved in a number of work packages within the MULTI-ACT project and is pleased to be leading the organisation of the Final Conference. Stay tuned for more details: registration will open at the beginning of March. For programme details, please see the programme below or visit the dedicated Event Page.

Learn more about the MULTI-ACT project by visiting: https://www.multiact.eu/, where a number of project brochures, videos, factsheets and full deliverables are shared!