EAN 2026 | Translating research into real-life benefits for patients with RLS

There’s always a gap I think with all diseases between wonderful research and actually what happens in real life. If you look at most studies you discover that the effect is much smaller when you apply it across there. With RLS the added problem is that much of the research has been done in theoretical neurology rather than practical and also because after the initial launches of drugs like dopamine agonists got a lot of research funding from pharma that has more or less dried up and so it is difficult to actually carry on and do more research which is definitely needed especially as we’re challenged with how we treat the condition going forward. Patients have an awful lot to add. I’m a clinician but as I’m getting older, I’m retiring, I’m now becoming a patient with RLS and diabetes and so on. And actually feeding in from the patient point of view gives you a perspective you cannot find very easily in clinical trials. And so particularly when developing things like guidelines, actually having patient input early on, right from the design going forward, is really important. On top of that, you can’t just drop a patient in and expect them to be able to do something in a guideline or controlling a clinical trial because there are technical aspects to it. And so, for example, I’m on the board of the European Federation of Neurological Associations and we train patients how to understand how to do things, how to contribute and that means you get someone who knows how a guideline is written and can contribute from a patient point of view and I’ve seen in the past working on guidelines back in the UK patients actually stopping us going up blind alleys so it’s definitely worthwhile.

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