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On 7 December 2022 at 16:00-17:30, the European Alliance for Patient Access (EAfPA), with support of the European Brain Council (EBC) and European Federation of Neurological Associations (EFNA), hosted an event in the European Parliament on Rare Neurological Diseases in the EU, exploring the importance of early diagnosis and real-world evidence (RWE) to drive better patient outcomes.

Hosted by MEP Tilly Metz (Greens/EFA, Luxembourg), European stakeholders convened to discuss the critical need for improved access to care, services, and treatment for patients living with rare neurological diseases. Conversations were centred on revisions of current legislation to meet the needs of patients living with a rare neurological condition, as well as the importance of RWE and early diagnosis.

Frédéric Destrebecq, EBC Executive Director, presented the Value of Treatment for rare neurological and neurometabolic diseases case study results and 2022 call to action.

Read more

Registration is now closed. The draft agenda is included below:

Draft Agenda - Rare Neurological Diseases in the EU- The Importance of Early Diagnosis and Real World Evidence to Drive Better Patient Outcomes

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The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project coordinated by the European Brain Council (EBC). According to the World Health Organization, disorders of the brain affect up to one in three people worldwide. 

A second round (VOT2) on new therapeutic areas was launched in 2019, focusing on The Value of Early Diagnosis and Coordinated Care for Rare Diseases (Ataxia, Dystonia and Phenylketonuria); and The Value of Early Intervention and Continuity of Care for Mental Disorders (Anorexia Nervosa, Autism Spectrum Disorder and Major Depressive Disorder).

Prof. Anita MacDonald will present a case study on phenylketonuria (PKU) at the 14th European Paediatric Neurology Society Congress in Glasgow, on 1 May (10:20 – 10:40).

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COVID-19 presents an opportunity to reset fragmented health and care systems so that they are integrated, driven by people and communities and resilient in the face of future systemic shocks. Even before the pandemic, the burden of mental health problems in Europe was very high, with more than one in 4 people experiencing a mental health problem. And the situation has been exacerbated by the sanitary crisis. Given the chronic nature of mental disorders like depression, this translates into a significant medical, social and economic impact worldwide. According to the World Health Organization, today countries spend less than 2% of their health budgets on mental health. However, much more can be done to manage and promote mental health efficiently. 

The Value of Treatment for Brain Disorders (VOT) is a health economics and outcomes research project coordinated by the European Brain Council (EBC). Our preferred scenario “Investment for Equal Access” is defined by the innovation driven by patient’s unmet needs and the value of treatment. Conclusions of a first VOT study (VOT1) link early intervention to measurable health gains such as improved recovery rates, reduced complications and disability, better quality of life and lower treatment costs for people affected by schizophrenia. In 2019, in order for the research to dig deeper into the current unmet needs in mental health care using a value-based approach, a second round (VOT2) on new therapeutic areas was launched; focusing on the value of early intervention and continuity of care for anorexia nervosa, autism spectrum disorder and major depressive disorder. Results of the case studies will be released during the 2022 Brain Awareness Week.  

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Motivated by addressing the existing gaps in the care pathways, the EBC Study on Ataxia, Dystonia and Phenylketonuria (PKU) aims to assess the benefits of early coordinated care and treatment, multidisciplinary care patterns (also addressing comorbidity) and health care providers education on outcomes to patients and costs.

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In the framework of this project, new case studies within a second round of the VOT research (VOT 2) have been developed. Studies on new therapeutic areas focusing on:

• rare neurological diseases (Ataxia, Dystonia and Phenylketonuria)
• mental disorders (Anorexia Nervosa, Autism Spectrum Disorder, Major Depressive Disorder)

were launched respectively in 2018 and in 2019.

As a follow-up to the 6th October 2020 VOT 2 consensus meeting and as part of the consolidation of the economic analysis and the proposed approach for more homogeneity in treatment and organization of care for the pathologies under study, two working sessions were organized on 11 December 2020.

For the Value of Treatment 2 – mental health disorders groups (Anorexia Nervosa, Autism Spectrum Disorder, Major Depressive Disorder), aim of this informative session was to interact with Judit Simon, Professor of Health Economics Medical University of Vienna, Austria on potential options for harmonization across case studies using the EU Horizon 2020 Pecunia project tools as an example.

For the Value of Treatment 2-rare diseases groups (Ataxias, Dystonia, Phenylketonuria), aim of the session was to discuss the “optimized” care pathway approach method proposed by Giuseppe Turchetti, Professor of Health Economics, Scuola Superiore Sant’ Anna – Pisa, Italy and to complement the WGs ongoing extremely valuable research (surveys and statistical analysis).

For more information on the Value of Treatment project, see here.

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The event was kindly hosted by MEPs Heinz K. Becker (EPP, AT) and Marian Harkin (ALDE, IE), both members of the European Alzheimer’s Alliance, moderated by Geoff Meade and chaired by EBC President, Prof. Monica Di Luca, and hosted an excellent line-up of expert speakers and roundtable participants, who each presented and led fruitful conversation around the future of Alzheimers research, patients and carers as well as the impact the disease has and will have on society.

Dr. Ron Handels and Prof. Philip Scheltens, members of the VoT Alzheimer’s Working Group, presented their work on the potential health-economic impact of treating Alzheimer’s and the patient journey for people living with Alzheimer’s. Mr Nis Peter Nissen then continued with a national insight, speaking on the cost of informal care of Alzheimer’s in Denmark.

The roundtable brought together key stakeholders in the Alzheimer’s and neurology communities, including leading academic and policy experts on the socioeconomic burden of Alzheimer’s from organisations such as the OECD and the European Commission.

The full agenda can be looked back on HERE.

The event also marked the conclusion of the “What if” series of policy roundtables, which launched in the European Parliament in September of last year with an event on the The Right to Dignity: Overcoming the stigma and inequalities faced by people with Alzheimer’s and a second meeting in January 2018 on Overcoming the ethical challenges of early detection and diagnosis.

The discussion and policy recommendations of last week’s and previous roundtables will now be captured in a White Paper on driving the policy agenda to optimise care for people with Alzheimer’s disease in Europe today and tomorrow. The White Paper, collaboratively developed and endorsed by MSD, EBC, EFNA and other stakeholders, will be launched at the meeting of EFNA’s Brain, Mind and Pain MEP Interest Group on 21 November 2018. As we enter campaigning season for the European Parliament 2019 elections, the White Paper will be a valuable tool to support advocacy activity focused on delivering better policy today and tomorrow for people with Alzheimer’s on EU and national level.

More can be read about the Value of Treatment, the Alzheimer’s findings (Posters / Report), and follow the launch of the white paper and all the latest EBC news and events here online and on Twitter.

©EPPGroup/Lahousse

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EBC was present in the exhibition hall to raise awareness of the work being done in Brussels with the recently released Brain Mission and brain research advocacy work, as well as to continue dissemination of the Value of Treatment project concluded last year.

On Sunday, 17 June, EBC Vice-President Prof. Wolfgang Oertel and EBC Treasurer Ms Joke Jaarsma gave presentations at the Scientific Theatre, which allowed for 15 minute overviews of a series of topics. Their talk was entitled “Mind the Treatment Gap!” and covered the unmet needs of Europe in regards to treatment of patients, early intervention as well as a deeper insight into the RLS working group of the Value of Treatment project. Furthermore, Prof. Maura Pugliatti gave a presentation on “Improved patient journey in neurology” which covered the results of the Multiple Sclerosis working group also witin the Value of Treatment project.

On Monday, 18 June, EBC took part in a joint session with EAN and EFNA on the Value of Treatment for Brain Disorders in Europe, chaired by Prof. David B. Vodušek, Prof. Maura Pugliatti, and EBC Vice-President Prof. Wolfgang H. Oertel, with presentations on Brain disorders in Europe: unmet needs by EBC Vice-President, Prof. Wolfgang H. Oertel; The value of early diagnosis and treatment. A patient journey by EBC Treasurer, Joke Jaarsma; The Value of Treatment: using economic modelling to assess costs and outcomes associated with healthcare interventions by Dr. Michela Tinelli of the London School of Economics; and The value of early treatment by Prof. Maura Pugliatti.

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Last week EBC held its final Board Meeting and General Assembly of 2017. It was a full two days starting with the Digital Health event at the European Parliament, and leading into the election of the new Executive Board on the evening of the 22nd (results below). The day continued over the EBC Board Dinner, which  served as a continuation for the event held prior and included three speakers on eHealth.

The two days of meetings continued the following day with the General Assembly, which produced an exciting amount of fruitful feedback and discussion of EBC’s current and planned activities moving forward. The main outcomes are shared below.

Main Conclusions and Action Points: 

Delegates to the Board and General Assembly of the European Brain Council (EBC) met on 22^nd-23^rd November to elect a new Executive Board, discuss current issues on EBC’s agenda and decide on the future direction of the organization. On this occasion, the following decisions were adopted:

Election of the new Executive of EBC

• The following Officers were elected by the Board:
  • President: Prof. Monica di Luca
  • Vice-Presidents: Prof. Wolfgang H. Oertel
    Prof. Patrice Boyer
  • Treasurer: Joke Jaarsma

Overall Conclusions and Core Actions

• EBC’s progress with regard to various projects and advocacy issues was discussed and endorsed:
  • The “innovation agenda” under which EBC will initiate work towards a revision of the EMA-guidelines, (2) respond to the consultation on Supplementary Protection Certificates and (3) continue the GOLUP-campaign, was confirmed.
  • The establishment of the “Value of Treatment” project in a continued fashion was approved. Delegates also looked forward to developing new case studies and/or carrying on disseminating the results and outcomes of the VoT white paper published in June.
  • EBC’s plan to apply for Horizon 2020 calls was positively received, particularly those related to brain research coordination and health technology assessment.
  • Plans for organizing an event in view of the 9^th Framework Programme for Research, with the aim of raising awareness of the importance of including “Brain research” specifically as one of the missions, were positively received.

• A few policy documents, submitted for consideration, were endorsed:
  • The “Digital Health Society Declaration”
  • The statement “Prioritising patient safety and public health across Europe post-Brexit”
  • The “Call to Action on Migration and Health”
  • The “Call to Action to enhance labour opportunities for people with chronic diseases” (with an accompanying letter to be provided to the European Chronic Disease Alliance (ECDA) which authored the document)
  • The joint statement on “medical training and professional development for patient safety”

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Please visit our booth to learn more about the Value of Treatment case study on Alzheimers and pick up your brand new extended publication of the Alzheimers case study findings or download it HERE.

Alzheimer’s disease (AD) is a progressive disorder that spans over many years, in other words: the brain
starts deteriorating years before symptoms emerge. When are affected people becoming “patients” across
the spectrum of AD and what can we do about it? Between the early signs of being affected by AD and the
ability to provide treatment, many years will pass and many things could have been done. Amidst the call for
early intervention and putting knowledge and resources in the hands of patients and care givers, we are still
faced with a number of societal, ethical, technical and medical challenges. These are the premises of our
lunch session, where we would like to discuss the concept of “early intervention” across its many facets and
develop a new understanding of AD.

In this short session, experts and stakeholders will present the scientific rationale for this new understanding
of Alzheimer’s disease and the ethical challenges it holds; explore the opportunities to monitor and control
the risk factors through eHealth interventions; and to assess the potential socio-economic impact of treating
AD before the onset of dementia.

Speakers include:

Moderator: Donna Walsh (EFNA)
SS4.1. Nilsy Desaint (MSD): Would You Want to Know If You’ll Get Alzheimer’s?
SS4.2. Dr. Alex Milton (University of Southampton): eHealth interventions to prevent dementia
SS4.3 Dr. Ron Handels (University of Maastricht): The value of treating Alzheimer’s disease before the onset of dementia

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