Few patients with a neuromuscular condition currently benefit from effective or curative therapies, and many do not have a definite diagnosis. Uniting healthcare and research would begin to address this and is therefore in the best interests of patients.
EURO-NMD members are not only specialist healthcare providers but also among the world’s leading researchers in the neuromuscular field and as such recognise the value in a network like EURO-NMD. Our healthcare providers share a wealth of experience in participating in collaborative networks and are well positioned to identify knowledge gaps and prioritise research to address them. Research in the neuromuscular field must be collaborative because of the rarity of individual conditions, patients and resources, and we will build upon valuable work already undertaken by making use of established transnational infrastructures and research networks.
Translational research will bring outcomes of basic research into the clinic through the many research-active expert centres in EURO-NMD, which will act as a “research-ready” network of expertise holding cohorts of patients with standardized clinical data, standardized baseline care and available biosamples. For our research to be successful and clinically meaningful, it requires the active participation of patients and health professionals alike.
We aim to keep our patients informed about research both general and specific to their condition. We will also highlight opportunities they will have to participate in this research which will could be in the form of biobanks, registries, natural history studies, clinical trials.