The research “is certainly important because it establishes what patients’ reactions are to what happens with their disease”. Thus Silvio Garattini, president of the Mario Negri Institute, comments on the results of the ‘What Als Wants’ study, the register that collects data on the experiences of patients with amyotrophic lateral sclerosis (ALS), carried out by the institute in collaboration with the Association Italian amyotrophic lateral sclerosis (Aisla), participating in a talk broadcast on Adnkronos.com.
An “certainly positive” aspect that emerges from the ALS Registry concerns the fact that “all patients are quite satisfied with their relationship with the doctor – observes Garattini – even if there is an “emotional” part in which the doctor is probably a little less careful: in communicating that it is a serious disease, which tends to evolve in a negative sense, there, of course, requires a lot of attention, empathy. There is no doubt that it is an important study, because if it is picked up by doctors – he adds – it will improve one of the “central” aspects of the doctor-patient relationship and also of the relationship between doctor and caregiver”.
ALS “is one of the many examples of the 7 thousand rare diseases – observes Garattini – And it is difficult to do research for these pathologies, because to set up relatively large studies, many centers must be involved”. Like Irccs Mario Negri, “for example, we did a study involving a combination of L-acetylcarnitine and riluzole. We saw an increase in lifespan, but it was a relatively small study. We would need to do a larger study size and perhaps starting much earlier, when we are still at the beginning” of the pathology, but “unfortunately it is impossible to find economic resources to carry out a study of this kind which requires the participation of many centers to have a sufficient number of patients”. Yet, with a “very modest” figure for the “European Commission”, such as “1 billion euros per year, many of the problems would be solved because we could have 20 groups in Europe studying the remedies” for this and the others” rare diseases. Unfortunately, however, the money for research – concludes Garattini – is considered an expense, while it must be considered an investment to find “therapeutic answers that are missing” because no one is taking care of them”.
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