If you have ALK-positive lung cancer yourself, or someone close to you does, then you know how much you depend on new treatments becoming available quickly. Clinical trials can sometimes give you access to targeted therapies years earlier. But in Europe that is becoming harder: there are tens of thousands fewer trial places today than ten years ago. That simply means fewer opportunities for you.
© Lung Cancer Europe, via Facebook
What does that mean for ALK patients in Belgium?
-
There are fewer studies close to home. A great deal of research is moving to the US and Asia.
-
Not every lung cancer study is relevant for ALK. The EU register lists hundreds of lung cancer studies, but only a small proportion are genuinely suitable for ALK patients.
-
Going abroad remains difficult. If you cannot find a suitable study in Belgium, taking part in the Netherlands or France often involves administrative hurdles that put many people off.
Is there hope? Yes — and it is time Belgium played its part.
Europe is trying to improve matters with new rules intended to make it easier to run one study across several countries. That is positive, but in practice there are still many delays and additional national requirements.
For someone with ALK lung cancer, every month counts.
The sooner a study opens, the sooner you can join. The less paperwork, the more opportunities.
What does ALK Positive Belgium want to achieve?
We want you to gain access to relevant studies sooner and closer to home. Concretely:
- Fewer hurdles in Belgium: we ask that Belgium does not add extra rules on top of the European ones. The simpler it is, the sooner you can join.
- More ALK-focused studies: universities and hospitals need support to launch new, independent ALK studies — certainly for people who develop resistance.
- Patients at the table from day one: your side effects, your quality of life, your questions — all of this needs to be built into studies. That is why we want patients involved from the outset.
- Genuine cross-border access: sometimes the best study for you is simply 50 kilometres away. That is why we argue for clear agreements between countries, support with travel costs, and a “trial navigator” who helps you personally to search, compare and enrol.
What can you do yourself right now?
- Talk to your oncologist about ALK-focused studies in Belgium and in neighbouring countries.
- Check the EU register and search for “ALK” or “anaplastic lymphoma kinase”.
- Contact ALK Positive Belgium if you would like help searching for or understanding your options.
Source: LuCE Policy Brief 2025 – “Clinical Trials in Europe: Key Trends & Issues”.