Author: Rachael Hansford

Fremanezumab – first anti-CGRP preventive therapy approved by NICE

Positive Recommendation by NICE for first anti-CGRP migraine therapy: AJOVY®▼ (fremanezumab)

Teva Pharmaceutical Europe today announced that the National Institute for Health and Care Excellence (NICE) has recommended AJOVY (fremanezumab) in its Final Appraisal Document (FAD) for the prevention of migraine in adults with chronic migraine. NICE recommends AJOVY® for use within the NHS in England and Wales for chronic migraine patients who have not responded to at least three prior preventive drug treatments.

The approval means that eligible migraine patients in England and Wales will join those in Scotland in having access to this new drug on the NHS. Fremanezumab was approved for use in Scotland on 13th January 2020.

AJOVY® is one of several monoclonal antibodies specifically designed to target the CGRP (calcitonin gene-related peptide) pathway, a key contributor to migraine and is the first anti-CGRP preventive therapy approved by NICE. AJOVY ® is a long-acting treatment that offers monthly or quarterly dosing options and can be self-injected. 1

Until the anti-CGRPs were approved, migraine preventive therapies in Europe were limited and none of the commonly used treatments (anti-epileptics, anti-depressants, beta blockers and botulinum toxin injections) were developed specifically to target the molecular pathways of migraine.2

NICE’s decision to approve the use of AJOVY® on the NHS in England and Wales for patients with chronic migraine is fantastic news. Anyone who looks after people with chronic migraine understands just how debilitating this neurological disorder can be. We have waited a long time for this new class of drug to be made available in the NHS, but now that we can prescribe fremanezumab, I am excited to see what a difference it will make to the lives of many of my worst affected patients

Dr Mark Weatherall, President of the British Association for the Study of Headache

Migraine remains under-diagnosed and under-treated in at least 50% of all patients. Less than 50% of people with migraine are not recognised by their general practitioner and less than 30% of migraine patients have management of their disease.3 Migraine typically presents as a moderate to severe throbbing headache, often accompanied by nausea and/or vomiting, with sensitivity to noise, light and/or smell.4

It is estimated that 1 in 7 adults are affected by migraine and women are three times more likely to be affected than men.5 Chronic migraine, defined as 15 or more headache days and at least 8 migraine days per month for more than three months, is estimated to affect around 900,000 6.7 of the adult population in the UK and can have a tremendous impact on quality of life. With 15% of people affected, Europe has the highest percentage of people with migraine of all continents. 8

NICE recommends AJOVY® for chronic migraine patients who have not responded to at least three prior preventive drug treatments. This decision is based on a dossier submitted to NICE for a Single Technology Appraisal (STA). Following issuance of the FAD, NICE will provide its formal guidance to the NHS in England. The full NICE recommendations and conditions can be viewed on their website.

Richard Daniell, Executive Vice President European Commercial, Teva:

This is an important decision to help the lives of migraine patients in England and signifies a recognition of the impact of this disease. Patients’ lives and choices are limited by their migraine. We are proud that Teva’s AJOVY® is the first anti-CGRP preventive therapy that NICE has considered to demonstrate cost-effectiveness leading to a reimbursement decision. In time we hope that this treatment becomes available for all adult chronic migraine patients across Europe.


AJOVY®▼ Package leaflet Information for the patient. – Last accessed: March 2020.

Khan S. et al. CGRP, a target for preventive therapy in migraine and cluster headache: Systematic review of clinical data. Cephalalgia. 2019;39(3):374-389

Pavone E, et al. ‘Patterns of triptans use: a study based on the records of a community pharmaceutical department’. Cephalalgia2007; 27:1000–1004.

NHS – Migraine ( Last accessed: March 2020

Migraine Trust – Facts and Figures (figure based on current UK adult population from the Office of National Statistics – [Last accessed: March 2020]

Buse DC. et al. ‘Chronic Migraine Prevalence, Disability, and Sociodemographic Factors: Results From the American Migraine Prevalence and Prevention Study’. J Head Face Pain; 52: 1456-1470. doi:10.1111/j.1526-4610.2012.02223.x

Chronic migraine population calculated by using 12% of migraine population (1 in 7 total population) as cited by Buse (above) amongst context of current UK population statistics from Office of National Statistics. Population estimates for the UK, England and Wales, Scotland and Northern Ireland: mid-2018. [Last accessed: March 2020]

[1] Stovner, L. J., Andree, C. 2010. Prevalence of headache in Europe: a review for the Eurolight project [Online] Available from: [Accessed on 13 September 2018]

About AJOVY®▼ (fremanezumab)

AJOVY® (fremanezumab) is indicated for the prophylaxis of migraine in adults who have at least four migraine days per month. AJOVY® is available as a 225 mg/1.5mL single dose injection in a prefilled syringe with two dosing options – 225 mg monthly administered as one subcutaneous injection, or 675 mg every three months (quarterly), administered as three subcutaneous injections. Like all injections, there is a chance of a skin reaction around the injection site e.g. redness, hardness or itching. AJOVY can be administered at home by a patient or caregiver, if instructed by a healthcare professional. Full product information can be accessed from the Teva website

About Teva

Teva Pharmaceutical Industries Ltd. (NYSE and TASE: TEVA) has been developing and producing medicines to improve people’s lives for more than a century. We are a global leader in generic and specialty medicines with a portfolio consisting of over 3,500 products in nearly every therapeutic area. Around 200 million people around the world take a Teva medicine every day, and are served by one of the largest and most complex supply chains in the pharmaceutical industry. Along with our established presence in generics, we have significant innovative research and operations supporting our growing portfolio of specialty and biopharmaceutical products. Learn more at

Data from Phase III Trial “SPI2” for Treatment of Progressive MS

MedDay Pharmaceuticals has announced that the second pivotal Phase III trial (SPI2) of its investigational product MD1003 has not met its primary and secondary endpoints. There were no treatment emergent safety signals. SPI2 was designed to confirm the results of the first positive Phase III study, MS-SPI, in progressive multiple sclerosis (MS). Detailed results of the SPI2 trial will be presented to the medical community at the upcoming American Academy of Neurology (AAN) 2020 Annual Meeting on April 29th in Toronto, Canada.

We are clearly disappointed that SPI2 did not meet its primary and secondary endpoints. Going forward, we will continue to evaluate the trial data and confer with regulators. We would like to thank our collaborators including the participating clinicians, medical staff and, most importantly, the patients for all of their efforts and participation in the trial. All were invaluable partners throughout the process of completing the SPI2 trial.

Catherine Moukheibir, Chief Executive Officer of MedDay Pharmaceuticals

“We will review the findings in detail to understand these outcomes to help inform future clinical research in progressive MS and other neurological diseases,” commented Frédéric Sedel, MD, PhD, Chief Scientific Officer and co-Founder of MedDay Pharmaceuticals. “I remain confident of the importance of the neurometabolic approach to neurodegenerative diseases with high unmet medical need.”

The randomised, double-blind, and placebo controlled SPI2 trial evaluated safety and efficacy of three daily doses of 100mg of MD1003 versus placebo in 642 patients with progressive MS without recent relapses, also called not-active progressive MS. The primary endpoint for the study was reversal of functional disability as measured by the proportion of patients with an improvement in either the Expanded Disability Status Scale (EDSS) or in the time needed to walk 25 feet (TW25) over a 12-month time frame and confirmed at 15 months. Secondary endpoints included the relative reduction in the risk of disability progression; global impression of response to treatment evaluated independently by both the patient and the evaluating physician; and mean change in TW25. Additional exploratory endpoints incorporated in this trial included brain MRI measures, quality of life measures and measurements of ambulation using a Fitbit® device.

For more information on the trial design, please visit:

£1.68m to fund research in intracranial hypertension for Birmingham researcher

Professor Alexandra Sinclair from the University of Birmingham’s Institute of Metabolism and Systems Research has been awarded £1.68m to fund research into intracranial hypertension (raised brain pressure), and develop a new treatment for Idiopathic Intracranial Hypertension (IIH), a rare condition that causes disabling headaches and can lead to blindness.

The award from the Sir Jules Thorn Charitable Trust will cover a 5-year programme focusing on IIH, which is most common in women with obesity, and has an incidence that is rising dramatically in line with the global rise in obesity.

The programme of research is also expected to reveal mechanisms behind other conditions that feature raised brain pressure, such as traumatic brain injury and hydrocephalus – and also has the potential to help treat raised intracranial pressure associated with space flight.

Professor Sinclair runs one of the world’s largest clinical services for people with IIH, and was instrumental in defining the first international guidelines to drive patient care.

Last year she published research that identified a potential cause for the condition – raised levels of hormones (androgens), which are believed to be an important driver for abnormal brain pressure.  This is a key step in determining the cause for the condition.

The programme of work supported by the award will include a clinical trial to evaluate an innovative new treatment approach discovered by Professor Sinclair and patented by University of Birmingham Enterprise.  The co-investigator in the trial will be Dr Kristian Brock, Principal Statistician from the Institute of Cancer and Genomic Sciences at the University of Birmingham.

Professor Sinclair commented:

Although the headaches experienced by people with raised intracranial pressure are overwhelming, long-term and disabling, we lack effective therapies to treat raised intracranial pressure, and there are no dedicated headache treatments.  The drug trial will aim to not only deliver a new treatment, but also further understanding of what causes the headache in IIH.

NASA’s Chief Health and Medical Officer Dr James Polk commented:  “Although our mechanism for vision change and potential elevations in intracranial pressure in astronauts may be due to the prolonged physiologic changes from weightlessness, we share some significant similarities. This clinical entity of spaceflight may be a different branch of the same tree, possibly with a common trunk. We are working to solve this issue with astronauts, but also want any research and lessons learned we find in space to help those suffering from IIH on the ground. Likewise, Professor Sinclair’s research in the IIH population may have far reaching implications, giving important clues on monitoring and treatment that can be used not only on the ground, but potentially in space.”

Shelly Williamson, Chair of the patient charity IIH UK commented:  “I am delighted to hear that Professor Sinclair has won this prestigious award and look forward with anticipation to the research starting.  Idiopathic Intracranial Hypertension devastates lives, with agonising headache caused by the raised brain pressure being the most reported symptom.  To have a drug that works on both brain pressure and headache, that is well tolerated, would be amazing as would research into the mechanistic causes of headache in IIH.  Research such as this has been long awaited by the IIH community and on behalf of the people we support I’d like to thank the Sir Jules Thorn Trust for awarding this grant to Professor Sinclair.”

The Sir Jules Thorn Award for Biomedical Research aims to fund translational research that will bring benefits to patients through improved diagnosis, or by assisting in the development of new therapies for important clinical problems.  It provides a single grant of up to £1.7m to support a five year programme of translational biomedical research selected following a competition among applicants from the UK’s leading medical schools and NHS organisations.

Find more articles, conference reports and news about headache topics on our website here.

Essex collaboration focuses on people living with neurological conditions

Tackling the challenges faced by people living with neurological conditions, such as multiple sclerosis and brain injury, is the focus of new research by the University of Essex and Healthwatch Essex.

The new partnership’s project is one of 53 innovative projects across the UK, to be funded by the government as part of UK Research and Innovation’s new vision for public engagement.

The Community Research and Engagement Project (COURAGE) will focus on supporting those people affected by, and living with neurological conditions and over the next few months will aim to develop a co-designed research strategy to address directly these people’s needs through actively engaging them in research design and delivery.

To launch the six-month initiative, a collaborative workshop took place at the University of Essex – bringing together over 50 researchers, academics, practitioners, support workers and those living with brain conditions – to start the strategy process.

Project leader Dr Andrew Bateman, from the University’s School of Health and Social Care, said:

Building a research programme to tackle the challenges experienced by people living with a neurological condition is a great opportunity that can potentially involve many academics at Essex. The voices of people affected by these conditions are often not heard. At the launch event, I heard how frustrating this is for people from the charities that are there to help, but not ‘listened to’. I am really looking forward to seeing what we can achieve together to raise awareness, devise studies and create innovative solutions.

Dr David Sollis, CEO of Healthwatch Essex, added:

Through the Essex Neurology Network, Healthwatch Essex has been promoting the understanding of neurological conditions by sharing the voices of those with lived experience. We are excited to work in partnership with the University of Essex to develop this platform and co-design the COURAGE Network’s research and engagement strategy.

Nationally, the 53 projects, worth £1.4m, will enable members of the public to contribute actively to research and innovation projects that affect their lives. The projects will target communities who would not normally engage with research and innovation, so they can shape research and innovation that is relevant to their lives and their local areas.

UK Research and Innovation’s Head of Public Engagement, Tom Saunders, said: “The 53 pilot projects that we have funded represent an exciting range of ways that researchers and innovators can involve the public in their work.

In 2020 and beyond, we will build on the lessons we learn through funding these pilot projects to help us achieve our ambition of making research and innovation responsive to the knowledge, priorities and values of society and open to participation by people from all backgrounds.

For information, email

Read our report by Andrew Bateman on the 2019 SRR and BSRM meeting

Topline results of Phase 1-2 CDNF trial

Herantis Pharma Plc announces topline results of Phase 1-2 CDNF trial

Topline analysis confirms positive safety and tolerability of CDNF in advanced-stage Parkinson’s disease patients, with encouraging biological responses as measured by PET imaging in some patients.

Results from the second part of trial, in which all patients will receive CDNF for an additional six months, are expected in Q3 2020

Company release 25 Feb 2020 at 9:00 am: Herantis Pharma Plc

Herantis Pharma Plc (“Herantis” or “Company”) has announced the topline results from the ongoing Phase 1-2 clinical trial examining Herantis’ proprietary neuroprotective factor and novel drug candidate, CDNF, in patients with Parkinson’s disease. Herantis is developing CDNF as a disease-modifying treatment with the objective of introducing a significant breakthrough to current standard-of-care therapies for Parkinson’s disease. As a novel neuroprotective and neurorestorative factor, CDNF acts on several mechanisms relevant to Parkinson’s disease and has been shown to protect neurons from degeneration and to restore the function of already degenerating neurons in preclinical studies.

The first part of the Phase 1-2 study, in which patients first received a surgically implanted dose delivery system provided by Renishaw plc, and then repeated and increased CDNF or placebo dosing for 6 months, met its primary endpoint of safety and tolerability. The recorded Serious Adverse Events (SAEs) were considered unlikely by the treating physicians to be related to CDNF and the affected patients fully recovered. Certain SAEs were considered to be probably related to device surgery and the drug administration process. The surgical and infusion procedures were improved to avoid any such incidents in the future.

The secondary and exploratory endpoints of the study evaluate initial signs of efficacy, including assessments based on the Unified Parkinson’s Disease Rating Scale (UPDRS), dopamine transporter PET imaging, actigraphy measurements and alpha-synuclein levels. At this early stage of data review, the Company observed promising signals in some patients, for instance in dopamine transporter PET imaging, which is an indirect measure of the dopaminergic function. As the trial is a first-in-human study involving a small number of patients at an advanced disease stage, this is an encouraging initial outcome. The Company will continue to assess the results through the extension part of the study which will last six months.

All patients who completed the first part of the trial volunteered to participate in the extension study in which every patient, including those previously randomly assigned to the placebo group, will receive one of the two dose levels of CDNF on a monthly basis. Herantis expects to announce the next set of results, including details on the exploratory endpoints, in Q3/2020.

“This first set of topline data provides a solid basis for the next part of the study and confirms the positive safety and tolerability profile of CDNF,” commented Pekka Simula, CEO of Herantis. “

Building on the established safety profile and encouraging observations, we have initiated the planning for a Phase 2 study with a longer treatment period that will assess the efficacy of CDNF in earlier-stage, well-characterised Parkinson’s patients. We currently expect to initiate patient enrolment in 2021. We extend our thanks to the clinical study sites and the patients who contributed to the advancement of this very important and challenging trial.

Study Design

The randomised, placebo-controlled Phase 1-2 trial is a first-in-human study that evaluates the safety and tolerability of CDNF, a novel experimental therapy, in a total of 17 patients with advanced Parkinson’s disease. In the main study, the patients received an implant of the Renishaw plc investigational drug delivery system. The patients were then randomised to receive either six monthly doses of placebo, or six increasing doses of CDNF, in a blinded manner. All patients who completed the main study volunteered to continue in an extension study, in which all patients, including those who previously received placebo doses, receive either lower or higher CDNF doses for another six months. After the extension study, which is expected to be completed in Q2/2020, the Phase 1-2 trial continues with a long-term follow-up study.

Study Objectives

The primary endpoints of the study will evaluate safety and tolerability of CDNF as well as of the drug delivery device, and accuracy of surgical placement of the device in the study patients. Secondary and exploratory endpoints include initial signs of efficacy of CDNF treatment, e.g. Unified Parkinson’s Disease Rating Scale (UPDRS), motor score evaluation, patient diary, dopamine transporter PET imaging, and the levels of different forms of alpha synuclein in serum and CSF.

Further information:

Herantis Pharma Plc, Pekka Simula, CEO, +358 40 7300 445

About CDNF

CDNF is a novel neuroprotective and neurorestorative factor highly distinct from conventional neurotrophic factors. An innovative drug candidate for the treatment of neurodegenerative diseases, CDNF, is patented internationally by Herantis. Supported by a strong preclinical proof-of-concept Herantis launched a first-in-human, randomized Phase 1-2 clinical study with CDNF in the treatment of Parkinson’s disease (PD). The clinical study has received funding from the European Union’s research and innovation program Horizon 2020 under the grant agreement number 732386.

CDNF has been safe in preclinical studies and in the completed parts of the ongoing Phase 1-2 clinical study. In disease models, CDNF has protected and regenerated dopamine-generating cells in the midbrain suggesting potential for disease modification of PD. It has also shown efficacy in non-motor symptoms of PD.

About Herantis Pharma Plc

Herantis Pharma Plc is an innovative drug development company breaking the boundaries of standard therapeutic approaches. Our regenerative medicine drug candidates, CDNF and Lymfactin®, aim to revolutionise the treatment of Parkinson’s disease and other neurodegenerative diseases, and of secondary lymphedema. The shares of Herantis are listed on the Nasdaq First North Growth Market Finland and Nasdaq First North Growth Market Sweden.

Brain Tumour Support: Sparkle up your day

Charity that supports brain tumour patients in Hampshire and across the UK appeals for the local community to get involved in a fundraising day on 7th May.

Brain Tumour Support, a charity that runs monthly Support Groups in Lymington, Southampton and Portsmouth, is asking for local groups, schools, companies and communities to get involved with ’Sparkle Day’ on the 7th May – a fundraising day that involves people bringing a bit of sparkle into their day and donating to Brain Tumour Support. “Whether it’s edible glitter on some cupcakes, wearing something sparkly to work or sticking glitter in your beard, we want everyone to get involved, get together, and donate,” says CEO Tina Mitchell Skinner, who set up the charity 16 years ago after losing her husband to a brain tumour. “Demand for our services is constantly growing and we urgently need to help more brain tumour patients and their families. To do this we rely on donations and we hope that the people of Hampshire will get behind our campaign and help us achieve our vision that no-one should feel alone when facing a brain tumour diagnosis.”

There are currently more than 100,000 people in the UK living with a brain tumour. The effects of a diagnosis can be devastating. Patients often lose their job, their driving licence and their independence. A brain tumour can also affect a patient’s personality and can cause depression and anxiety. The impact on life is felt by loved ones too, and that’s why Brain Tumour Support’s services, including support groups, counselling, and on-line and telephone support, are available for family and friends as well. It is support that proves to be a lifeline for many.

The charity hopes that local schools, companies, community groups and individuals will come up with unique ways of sparkling up their day.

“Last year, we had teachers, social workers, fire fighters, hospital staff, playgroups, friends, families and even pets joining in,” said Mrs Mitchell Skinner.

To meet the growing demand for our services, we need to raise £600,000 per year. Through Sparkle Day 2020, we hope to raise £12,000 – enough to fund two of our Support Groups for twelve months. And if you can’t hold an event on the 7th don’t worry, there will be lots of people sparkling up for us on other days in May too. Anyone wanting to get involved can contact our Fundraising Team for ideas or help with their event.

Please visit to find out more information or contact the Fundraising Team on 01454 422705 or


Dravet Syndrome UK – new professional advisors

Dravet Syndrome UK (DSUK), the charity dedicated to improving the lives of those affected by Dravet Syndrome, is expanding its board of professional advisors. Dravet Syndrome is a life-limiting neurological condition that occurs in one child out of every 15,000 born in the UK. 

In 2019, the number of families that DSUK supports grew to more than 500. Significant progress has been made in the scientific understanding of Dravet Syndrome, enabling the development of new and emerging treatments. Given this changing environment, DSUK announces the following appointments to its Professional Advisory Board. 

Professor Helen Cross OBE becomes Chair

A globally-recognised authority on Dravet Syndrome, Professor Helen Cross is appointed to the newly-created role of Chair. Awarded an OBE in 2015 for her services to children with epilepsy, Professor Cross is currently Prince of Wales’s Chair of Childhood Epilepsy at UCL-Great Ormond Street Institute of Child Health, Great Ormond Street Hospital for Children, London and Young Epilepsy, Lingfield, UK.

Commenting on her appointment, Professor Cross said,

DSUK has an incredibly important role to play within the Dravet Syndrome community. The support and information they provide makes a huge difference for families living with this difficult, life-limiting syndrome, while their fundraising and support of medical research is greatly valued. I look forward to working even more closely with the charity during exciting times of change ahead

Dr Andreas Brunklaus brings additional expertise

In recognition of his recent research into the natural history of Dravet Syndrome and quality of life expertise, Dr Andreas Brunklaus, represents a new addition to DUSK’s panel of Advisors. Paediatric Neurologist at the Royal Hospital for Children, Glasgow, and Honorary Senior Clinical Lecturer at the University of Glasgow, Dr Brunklaus joins alongside his colleague and existing Advisory Board member, Professor Sameer Zuberi. 

“Receiving a diagnosis of Dravet Syndrome can be devastating for families and feel very isolating”, explained Dr Brunklaus. “It has an impact on so many different aspects of the families’ lives, not only health-related quality of life but overall quality of life. As well as providing a wealth of information, DSUK offers a place for families to share their concerns, to seek advice, and get support on how to address the wide range of challenges that they encounter. I think this is really important and I’m delighted to be joining the Advisory Board”.

Setting priorities for the future

“These appointments will help us navigate the scientific and medical environment, and set priorities for where DSUK can make the most difference for families living with Dravet Syndrome,” said Galia Wilson, Chair, DSUK. “Formalising Professor Cross’s role as Chair recognises the important contributions she is making on a global stage and will help ensure DSUK remains closely aligned to the latest medical knowledge regarding this complex condition.

“We are also thrilled to welcome Dr Brunklaus to our panel of Advisors”, continued Galia. “While seizure control continues to be critical, there is an urgent need to also address the often severe comorbidities associated with Dravet Syndrome. Dr Brunklaus brings valuable expertise and insights that will help us achieve this goal”. 

About Dravet Syndrome:

Dravet Syndrome is a rare neurological condition causing severe, difficult to control seizures, alongside varying degrees of learning disability and other issues, such as autism, mobility problems, speech difficulties and feeding problems. Dravet Syndrome affects around one in every 15,000 people. In most cases, Dravet Syndrome is caused by a mutation in a gene known as SCN1a.

About Dravet Syndrome UK:

Dravet Syndrome UK (DSUK) is an independent charity dedicated to improving the lives of those affected by Dravet Syndrome through support, education and medical research. We do this by:

  • Supporting families affected by Dravet Syndrome emotionally, practically and financially. 
  • Raising awareness and understanding of Dravet Syndrome among medical professionals
  • Funding medical research to increase understanding of Dravet Syndrome, improve its management, work towards better outcomes and to hopefully one day find a cure

Epilepsy Research UK and Young Epilepsy – Joint Fellowship

Epilepsy Research UK (ERUK) and Young Epilepsy announce Joint Fellowship

This unique research collaboration aims to improve epilepsy treatment for young people by addressing the causes, prevention and clinical management of childhood epilepsies.

There are approximately 112,000 children and young people with epilepsy in the UK. Epilepsies that start in childhood can be linked with significant associated conditions affecting learning, motor control, cognition and behaviour. An epileptic seizure may be the first sign of a brain disorder, but it is the impact of the underlying condition on learning, behaviour, and participation in society that may result in the most disabling consequences for the child and family.

Anti-seizure medications are designed to control events but disappointingly have little or no, and in some cases a negative, impact on the associated neurodevelopmental conditions of epilepsy.Following ERUK’s International Expert Workshop on Epilepsy and Neurodevelopmental Disorders, a commitment was made to prioritising research to drive innovations in the treatment of childhood epilepsies to reduce the impact of the condition on children and their families and carers.

Professor Helen Cross OBE, Prince of Wales’s Chair of Childhood Epilepsy, President of ERUK and Young Epilepsy Trustee says,

Contributing to research into the childhood onset epilepsies and associated comorbidities, an often-neglected area, offers a real chance of making a difference to children with epilepsy and their families

Young Epilepsy’s research programme, under Professor Cross, is focused on achieving better outcomes through early diagnosis and intervention in every aspect of childhood epilepsy.

Building on the strategic priorities of both organisations, ERUK and Young Epilepsy are combining forces by announcing this joint Award. From May 2020 the charities will be inviting high quality Fellowship applications to address the causes, prevention and clinical management of childhood epilepsies.

Fundamental to the partnership will be engagement with the Young Epilepsy Young Reps, a panel of children and young people living with epilepsy, who will be asked to prioritise areas they would like to see answered by research. The outcomes from the engagement with children and young people with epilepsy will influence the decision-making criteria when awarding the joint fellowship.

Maxine Smeaton, Epilepsy Research UK CEO, says,

Epilepsy in childhood can have a life changing impact on families. We are working on research into new drug therapies to reduce seizures and the associated side effects and help families manage the condition – but we are also investing in pioneering research that will bring us closer to preventing epilepsy in the future

Young Epilepsy CEO, Mark Devlin says, “Young people understandably want more answers to the impact of epilepsies on their lives. This research fellowship is an exciting opportunity to improve current knowledge, potentially contributing to the development of new diagnostic techniques and more effective treatments.” or email for more information.

Dementia Research: New Alzheimer Europe discussion paper

Discussion paper highlights need for involvement of a more diverse set of people in dementia research

Brussels, 18 February 2020 – Alzheimer Europe (AE) has launched its new publication: “Overcoming ethical challenges affecting the involvement of people with dementia in research: recognising diversity and promoting inclusive research.”

The ethics working group set out in 2019 to explore different ethical challenges affecting the involvement of people with dementia in research. Ethically sound involvement in research is about how people with dementia are treated but also about who sets the research agenda, who is involved, at what stage and in what capacity. People with dementia should be involved in research not only as participants but also in the context of Public Involvement. A comprehensive review of the literature and rigorous debate led to the publication of a discussion paper and recommendations which are targeted at researchers, members of ethics research committees and funders of research. Valuable input was also provided by the European Working Group of People with Dementia and several independent experts.

People with dementia form a diverse heterogeneous group made up of people with multiple/intersecting identities and characteristics. There are, for example, people with dementia from different ethnic groups, of different ages and gender identities, and with different disabilities, levels of education and socio-economic backgrounds. People from minority and marginalised groups continue to be underrepresented in research, resulting in their experience, perspectives and needs being ignored.

Multiple characteristics and factors need to be considered when trying to attract a diverse set of people to research. However, it is important to avoid locating ‘the problem’ in the individual, as this detracts attention from the way that structures, organisations, procedures and systems create problems and lead to discrimination and marginalisation. The tendency for researchers to consider some people with dementia as ‘hard to reach’ may result in them overlooking their own responsibilities with regard to the promotion of diversity and inclusive research. At the same time, the requirements and methods needed for inclusive research must correspond to those required for good quality and hence ethical research. Failure to find the right balance would result in unsound research which needlessly exposes people to risk, inconvenience and burden.

It is hoped that this discussion paper will promote useful and constructive debate and encourage the ethically sound involvement of a more diverse set of people with dementia in all aspects of research.

Alzheimer Europe would like to thank the members of the ethics working group, namely Dianne Gove (Chair), Jean Georges, Mohammed Akhlak Rauf, Ann Claeys, Corinna Porteri, Ingrid Hellström, Jennifer van den Broeke, Karen Watchman, Karin Jongsmaa, Krista Tromp and Saloua Berdai Chaouni.

The discussion paper can be purchased or a copy freely downloaded from the Alzheimer Europe website: