Can We Transform Global Epilepsy Care? - Prof. Nicola Speccio, Bambino Gesù Children's Hospital, Italy
Did you know that delayed diagnosis and unequal access to modern treatments affect people with the epilepsies worldwide? Today we hear from Prof. Nicola Specchio, Neurologist specialising in Complex Epilepsy, who shares his insights into the biggest global challenges and the emerging solutions shaping future care.
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Episode Highlights
Delayed diagnosis, inequitable access to modern anti-seizure medications & persistent stigma across regions.
ILAE Europe priorities: stronger integration, cross-border collaboration & equitable care for all.
Advances in precision medicine, biomarkers & neuroimaging driving more targeted treatments.
Why earlier intervention can significantly improve development, cognition & long-term outcomes.
About Prof. Nicola Specchio
Prof. Nicola Specchio is Head of the Epilepsy Unit at Bambino Gesù Children’s Hospital in Rome and a leading expert in rare & complex epilepsies. He is Chair of ILAE Europe (2025–2029) and has published extensively on seizure classification, DEEs & drug-resistant disease.
Full profile: nicola-specchio
Organisations mentioned:
Topics mentioned
delayed diagnosis
treatment inequity
stigma
precision medicine
biomarkers
neuroimaging
early intervention
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Trailer
00:00 Nicola Specchio
“We are having very nice results in terms of research. One is the precision medicine, definitely, because we have new tools for genetic diagnostics, which are the basis of choosing the right drug for the right patients…”
Introduction
00:18 Torie Robinson
Welcome to Epilepsy Sparks Insights! I’m your host, Torie Robinson, and here we talk with specialist clinicians and researchers to spark improved understandings of the epilepsies worldwide. If you’re new here, please subscribe so you don’t miss future conversations – and let’s get into today’s episode, where, I’m joined by Prof. Nicola Specchio, newly appointed Chair of ILAE-Europe and a leading clinician-researcher specialising in rare and complex epilepsies. We are going to talk about the global challenges in epilepsy diagnoses and care, the priorities shaping his work over the next 4 years, and what international collaboration can teach us all about improving diagnosis and treatment for people affected by the epilepsies worldwide.
The biggest shared challenges in epilepsy care today
00:58 Torie Robinson
So Nicola, what would you say are - and this is for our listeners around the world, whether it's US, Europe, Africa, Asia, and beyond - what do you see as the biggest shared challenges in epilepsy care today?
01:12 Nicola Specchio
Hello, hi, good day everyone. Yes, that's very a important relevant question.You know, across continents the cross challenges are actually surprisingly similar. You know, there are some issues that every people and every physician working in the epilepsy world faces trying to treat patients. So firstly, the late diagnosis or the inaccurate diagnosis remains a universal issue. I don't know whether this is due to the limited access to diagnostics like maybe neuroimaging, EEG or genetic evaluation, or simply because we need to train more and more physicians -this is something that should be looked at more deeply. There is another point which I believe is really relevant and it may remain universal. So, inequity in access to modern anti-seizure medication, even in high income regions, and moreover, is critically limiting in the low-resource setting. And then there is another point which I believe is very, very important: the integration of care and integration of the team, the lifelong care, the multidisciplinary team, which is something that is relevant because we have to treat not only seizures but also its comorbidities. And finally, the stigma also remains quite consistent worldwide and then this is why we need to shape more education on stigma and we need to improve and we need to - at a certain stage - talk more about patients, about families, all over the world, just to reduce stigma.
03:22 Torie Robinson
Thank you very much. I could not agree more. And [it was] especially interesting, that bit you said about symptoms other than seizures. Those are often very left out. So I thank you for that.
03:33 Torie Robinson
Now, I know that you're very newly appointed in the role of chair of ILAE Europe, which is fantastic, congratulations!
03:39 Nicola Specchio
Thank you very much.
03:40 Torie Robinson
What are your priorities in this role? What will you be focusing on? And what do you see or what do you desire the impacts of your work…and the work of the ILAE Europe to people affected by the epilepsy across the region!
Cross-border collaboration and priorities
03:54 Nicola Specchio
I'm really honoured and proud to cover this role for the next four years. And just wanted to make the point when we are talking about highly Europe region, we are talking about 47 different chapters of the international league against epilepsy. Moving from Portugal to to Uzbekistan and to Norway to Malta. So, it's really a huge region with different situations. Therefore, my priorities based on such a large area definitely are three major priorities I do have.
So, inclusion and connection, equity and quality. So, firstly, what I strongly believe is that we need to have more integration in the epilepsy care around Europe. And this can be done utilising the opportunity that we do have right now based on the broader WHO Intersectoral Global Action Plan.
05:08 Torie Robinson
Mm-hmm
05:08 Nicola Specchio
One other point which I really I would like and I will put the majority of efforts [into] is the cross-border collaborations. So, what we would like is having expertise, guidelines, and training flow easily between different countries and not just in academic centres, but really trying to reach everyone in the region. And also (and this is close to what I just said), is trying to invest in development of networks, specialised networks for difficult to treat epilepsy, for rare and complex epilepsy, and improving the access and having easiest access to the pathway to the surgical pathway for example. Ultimately, it's definitely… the idea is to have some kind of measurable improvements for the next four years, which is patient care, but also education around the region.
06:31 Torie Robinson
And do you mean education of patients, carers or clinicians as well?
06:36 Nicola Specchio
It's both: educational patient care. But one of the strong efforts we will do, we will put, is on education on all physicians. We have a number of educational activities around the ILAE Europe region which are strong, but we need to make them more easily accessible to physicians coming from countries in which there are less opportunities for education.
Overlap between ILAE and EpiCARE
07:12 Torie Robinson
And would you say that there's some overlap here with what you've just spoken about with ILAE Europe and EpiCARE, for instance?
07:18 Nicola Specchio
Yes, definitely. EpiCARE is a network which was built some years ago, in 2016, and supported by the European Union, and is a European network on rare and complex epilepsies. And definitely, ILAE Europe has a memorandum of understanding with EpiCARE and we're working together on different pathways.
Precision medicine, research outcomes, hope, and collaborations
07:51 Torie Robinson
What is some of the latest research, collaborations between researchers and clinicians and patients and caregivers, what has been the outcome of these studies that gives hope for people living with the epilepsies in high income countries and low income countries?
08:08 Nicola Specchio
Research should include all the all the stakeholders. So we have the families, we have the physicians, and then there are basic scientists, and then there is also industries. So, but, to me, there are two areas currently that are, may give nice results in the next future. Firstly is what we call precision medicine. What we need to do is put them together in the same room (different stakeholders, including physicians, including families, including basic scientists, and including industries) and the discussion transversal between all those entities may definitely improve a lot the research pathway. But what I believe is that there are now, currently, two major areas in which we are having very nice results in terms of research. One is the precision medicine, definitely, because we have new tools for genetic diagnostics, which are the basis of choosing the right drug for the right patients. But also, we're having nice results in terms of biomarkers in some immunomediated epilepsies. Advanced neuroimaging also is making the difference for research purposes and it allows to define epilepsies not only by symptoms alone but trying to define the underlying mechanisms; and this leads definitely to the targeted therapies.
Improving outcomes through earlier intervention
09:57 Nicola Specchio
And then the second point to me is the global push for an earlier intervention for those patients. And now we talk about surgery, dietary therapies, neuromodulation, and different standardised pathways that may relieve patients from drug-resistant epilepsies. So that's very, very relevant in these current years and this is what we need to look forward and we need to work for the next few years just to improve and improve the quality of life of our patients.
10:42 Torie Robinson
Commonly we focus on medication, surgeries, but even, I mean, for instance, looking at GLUT1, we like primarily look at diet, right? So do you think it's important that we try and ask each other questions to kind of look outside our bubble sometimes and look for new potential preventions and treatments?
11:01 Nicola Specchio
Yeah, that's the job, for example, and you just mentioned the GLUT1, which is one of the conditions where we do have a precision treatment, as you mentioned. But we need to find more and more of those approaches, let's say. So, for example, having trying new medications, medications that they do exist, but trying in conditions for which you may have an interference with the basic mechanism, the pathophysiology. the concept of the repurposing drugs is something that makes the pair with what you just did as an example.
11:51 Torie Robinson
I think, seven years in rare disease between symptoms and diagnosis. So hopefully we can shorten that amount of time, right?
11:59 Nicola Specchio
That definitely, that seven years, it's too much for now. We need to go down, down, down, and we have to make possible that diagnosis, etiological diagnosis will come out as soon as possible.
A global minimum standard for epilepsy care
12:13 Torie Robinson
Looking ahead, what do you think, what do you believe that the global epilepsy community, including all parties, what could we achieve together that no other single country or region could accomplish alone? Again, so what's the greatness about us working together?
12:29 Nicola Specchio
That's the point also, going back to the concept of the regions and networks - and ILAE Europe is one example, but there are so many other examples - so, ideally, what we should do together, globally, is creating a global minimum standard for epilepsy care.
12:55 Torie Robinson
Mm-hmm.
12:55 Nicola Specchio
So something that should be shared, evidence-based set of diagnostic and treatment pathways around every countries in our community: the community of neurologists, child neurologists, epileptologists, working around the world. And this should be done regardless of resources. And also, in making your point when you say ok “No single country could accomplish alone.”, yes, I agree with you. And no single nation and country can generate the evidence, the training, the advocacy, because all of those activities and including the lobbying and changing the policies around for patients with epilepsy; those activities can be done only with the job done together with a number of countries. So trying to establish what? Let's say a global benchmark that reduces that, that reduces all the severe situations in which some patients with epilepsy are, and prevents the aggravation. So yeah, this is something that is a transformative step toward equity. I'm strongly believe about this.
14:34 Torie Robinson
I think it's so important that rather than us operating in silos, we need to come together and share information, question ourselves, and that includes physicians, clinicians, and be able to ask each other questions. Sometimes rather than duplicating thing (although in science duplication of course is very important!), but we can come together and ask each other questions, right? Have these regular meetings between physicians saying “What's the answer to this? I don't know!” And then somebody else being able to provide that answer, and so then you can more effectively and more quickly [and] effectively help the patients and families.
Not all epilepsies are forever
15:16 Nicola Specchio
The idea that epilepsy is always lifelong or unchangeable should be overcome.
15:25 Torie Robinson
Mm-hmm.
15:25 Nicola Specchio
Many, many people achieve seizure freedom with appropriate therapy. And even with seizure persist[ence], early or structured treatment can improve development, improve cognition and quality of life. So epilepsy is not really a destiny; it's a condition that we can manage, we can understand better, and we can do something good in terms of improvement with the right care. And this is why we need to work every one of us together with the other.
Final thoughts
15:59 Torie Robinson
A huge thank you to Nicola for sharing such thoughtful, practical insights. His leadership in improving collaborations, decreasing disparities in care, and embracing emerging innovations gives us all plenty to consider when thinking about how we can also support people affected by the epilepsies across the globe, together. If you found our chat helpful, please do give it a like, subscribe, and hit the bell so you’re notified when new episodes drop. I’d also love to hear your thoughts or experiences in the comments below - as always, I do read them! See you next time.