“The Nemo clinical centers are multidisciplinary centers with high levels of care for patients suffering from neuromuscular diseases, in particular dedicated to patients with amyotrophic lateral sclerosis (ALS), where assistance is not only central from diagnosis to the most terminal stages of the disease, but its role in disease management and research is also fundamental. The ALS Registry fits into this context because it is a fundamental element for better deciphering the natural history of a disease which remains extremely heterogeneous in its presentation methods. and evolution and which, therefore, requires high attention and in-depth analysis of not only the mechanisms, but also the methods of presentation”. Thus Federica Cerri, medical-scientific commission of Aisla (Italian Association of Amyotrophic Lateral Sclerosis) and neurologist specialized in ALS at the Nemo Clinical Center in Milan, comments on the results of the ‘What Als Wants’ study, a register that collects data on the experiences of patients with amyotrophic lateral sclerosis (ALS), created by the Mario Negri Institute in collaboration with Aisla, during a talk broadcast on Adnkronos.com.
“The Nemo clinical center, in Milan in particular – continues Cerri – is extremely attentive and focused on research, which is essential for good care”, that is, “what the patients ask for. It is therefore an answer that arises from a question of patients and caregivers. The patient asks for therapy, asks to be able to actively participate in his illness path, asks to be able to be an active part in research. And this is an answer that, as centers, we try to use absolutely shared with other chronic degenerative pathologies, therefore, the multidisciplinary experience of the Nemo clinical centers can be a good treatment model to be applied even in different disease contexts”.
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