They join forces to be more competitive: Telethon, AIM and ASNP have created the Neuromuscular Alliance to develop research and improve the levels of care and clinical research on these diseases, which affect over hundreds of thousands of people in Italy. An agreement giving life to a new group called “Neuromuscular Alliance” with the aim of promoting training and clinical research in Italy in this specific area. The agreement further strengthens a network that has developed and grown progressively over the years, managing to involve the main Italian clinical and research centers and to create solid relationships with patient associations, thus becoming able to compete internationally not only in attraction of funds, but also and above all in the involvement in clinical studies on neuromuscular diseases. Furthermore, the Alliance intends to act as an authoritative interlocutor in ministerial structures, the national and regional health system, the business community, the patient community and any other entity useful for promoting planning in the field of scientific research on neuromuscular diseases. The neuromuscular diseases known today, including muscular dystrophies, spinal atrophies, peripheral neuropathies, amyotrophic lateral sclerosis, etc. they are many, some very rare, others decidedly frequent, and they affect hundreds of thousands of people in our country.
Guido Cavaletti, coordinator of the Alliance, underlines: “We have all contributed with enthusiasm to an initiative that we believe has unique characteristics thanks to the complementary skills of the partners and their habit of operating “in a network”. The Italian model of cooperative network of the two scientific associations is known and appreciated by specialist colleagues from all over the world. All of us have the primary goal of achieving tangible results for our patients as soon as possible and we are now convinced that this close collaboration is the most efficient way to achieve our goal”. The collaboration between the three organizations will share specific experiences and skills. The two scientific associations will contribute in particular to the development of scientific knowledge, the training of doctors, the accurate collection of data within the register of neuromuscular diseases and the definition and development of clinical protocols and participation in international ones. Telethon Foundation will make available to the Alliance its project evaluation system – based on peer review and borrowed from NIH – its know-how as well as the consolidated experience gained in the field of registries and biobanks, and will ensure coordination with the Association of the Registry (legal entity currently owner and responsible for data management of the platform of registers of patients with neuromuscular diseases).
The members of the Coordinating Committee of the Alliance for AIM: Maurizio Moggio, IRCCS Ca’ Granda Foundation, Ospedale Maggiore Policlinico, University of Milan; Tiziana Mongini, Department of Neuroscience “Rita Levi Montalcini”, University of Turin; Antonio Toscano, Department of Neurosciences, University of Messina. For ASNP: Guido Cavaletti, Department of Surgery and Translational Medicine, University of MilanoBicocca, Monza (coordinator of the Alliance); Davide Pareyson, Department of Clinical Neurosciences, IRCCS Foundation, “Carlo Besta” Neurological Institute; Angelo Schenone, Department of neuroscience, rehabilitation, ophthalmology, genetics and maternal and child sciences, University of Genoa. For the Telethon Foundation: Lucia Monaco, scientific director; Alberto Fontana, member of the CDA Telethon; Anna Ambrosini, Head of Research Programs Area. The headquarters of the Alliance will be at the Telethon Foundation in Milan. Associazione Italiana di Miologia (AIM www.miologia.org) is a multidisciplinary scientific society established in 2000 with the contribution of 64 founding members; it currently has numerous active members who operate in most of the Italian centers that deal with the diagnosis and management of patients with muscle diseases in various capacities and who operate within the NHS. Over the years, AIM has been particularly active and efficient in the promotion of clinical and basic research, as well as in the improvement and dissemination of the care protocols applied with reference to the various pathologies. The Italian Association for the Study of the Peripheral Nervous System (ASNP www.asnp.net) is a scientific society established in 2010 as a natural evolution of the study group of the same name (the “GSSNP”) existing since 1996. It brings together numerous active members who work at the most of the Italian centers that deal with the diagnosis and management of patients suffering from peripheral neuropathies of various kinds, and that operate within the NHS, in healthcare facilities, hospitals, universities, IRCCS. Over the years, first the GSSNP and then the ASNP have been particularly active and efficient in the promotion of clinical research as well as in the improvement and dissemination of care protocols applied to the various pathologies. Telethon Foundation (www.telethon.it) has always financed research on genetic neuromuscular diseases. Furthermore, since 2001 it has instituted a tender to specifically support clinical studies aimed at improving the quality of life of patients with neuromuscular diseases to respond to the need expressed by the Unione Italiana Lotta alla Distrofia Muscolare (UILDM), from which it originates (tender Telethon-UILDM). Through these funding Telethon has contributed in the last 10 years to the development of a national clinical platform to disseminate the best standards of care in the area and to help prepare the clinic for the implementation of therapeutic proposals deriving from basic and pre-clinical research ( so-called “trial readiness”).