Answers must be given. Because many, and various, are the questions. To report the importance of information and data management in the challenge to multiple sclerosisin particular for all the people who must face an invisible battle daily for the complexity of what it presents, are the experts who participated in the congress of the Italian Association of Multiple Sclerosis (AISM) and its foundation (FISM), held in Rome.
The challenge is integrate data clinical, genetic, magnetic resonance imaging and measures reported by the patient thanks to digital platforms, e Analyze all information thanks to the power of the software of Artificial intelligence. With this strategy it will be possible to redesign the prevention and care of multiple sclerosis, and more generally to give a new impulse to the protection of brain health.
The value of the AI
Artificial intelligence is certainly one of the key tools to promote this paradigm change, as Sergio Baranzini, professor of neurology at the University of California in San Francisco, who decided to collaborate with those who have promoted the collection of data for years, recalled.
“FISM was a pioneer in the collection of data for research, and had a forward -looking vision with the establishment of the disease register. That’s why we decided to collaborate at different levels with AISM and its foundation”
It’s his comment.
THE data collection and analysis models developed in the US will be applied to those contained in Italian databases with the aim of develop software capable of identifying the evolution of the disease specifically for each individual person. The traditional type of data analysis that model the disease and related pathologies based on discrete stages of the pathology must be replaced by models capable of evaluating the temporal course of the disease: a model that photographs the biological onset of the disease and hidden symptoms. In this new model, the data generated by the people who live with the disease are fundamental to define the different clinical expressions of the disease.
“A science that combines data of different origin is a science of collaboration between different actors, first of people who live with the disease and their caregivers. The data generated by patients are indicators impacting a renewed health value and must contribute to the development of new clinically significant descriptors for people with the pathology, also as criteria for access to treatments”
explains Paola Zaratin, scientific director FISM.
The Spoke model
Today doctors and researchers have different levels of knowledge against a disease. A doctor can examine the clinical characteristics of a patient and prescribe biochemical analyzes and some images diagnostic exams.
“Other researchers instead lead molecular analyzes on champions who come from that patient, as a genetic investigations. In fact we are looking at the same person from different angles, And perhaps the answer to the question of what is going on to that patient is finding together all these different ways that we have to know it today “
Baranzini explains.
That is, the information we can extrapolate from these data, taken individually, are less significant than we could get by combining them together. From this picture it is born Spoke, digital platform Which aims precisely to the integration of different types of large -scale data to extrapolate significant information in the research and clinic. Acronym for Scalable Precision Medicine Open Knowledge EngineSpoke is a system that brings together further 70 Biomedicine databases and 9000 diseases in its full version. There are metabolic, genetic, anatomical, clinical, pharmacological data: they are all connected to each other by semantic relationships. For example, it is possible, starting from the genes, to trace the diseases to which they are connected, or understand how the action of a protein is connected to another, which drugs are active against which disease, and which targets affect.
“In this way we manage to put together the entire field of biomedicine: within Spoke there are hundreds of millions of concepts connected to each other, ranging from genes to symptoms”
The expert explained.
“Designed as a research tool, it is also preparing to become a useful tool for clinicians, especially in the case of particularly complex diseases such as multiple sclerosis”
Baranzini explains.
On the one hand, in fact, Spoke, combined with artificial intelligence tools, can be useful for identifying new pharmacological targets, but starting from the clinical data of a patient could help anticipate the worsening of a disease or even a put the diagnosis before the symptoms are manifested.
The value of the Italian register
Meanwhile, the Italian Multiple Sclerosis Register (RIMM)the large clinical database that collects the story of 94,000 people with SM and related pathologies. A unique heritage of “Real World” data that allows you to customize the treatments and better understand the evolution of the disease.
Today, Rimm has about 94,000 registered cases, becoming One of the largest databases in Europe in the field of sm. This milestone was possible thanks to the tireless work of the technical operating and coordination structure (Stoc) and the involvement of the network of 190 clinical centers distributed throughout the national territory.
To date, the Rimm collects information on: 94,000 people with multiple sclerosis (about 70% of the Italian population with the disease), 882 with related pathologies such as NMOSD and Mogad, 6,000 people with multiple sclerosis with a pediatric debut and 7,600 women with recorded pregnancy, in addition to 13,400 people with progressive disease.
From 2014 to today, the register has supported 65 scientific studies (of which 23 still in progress) and produced 47 publications in international magazines. THE 190 Centers now adherent (they were 45 at the beginning) constantly feed a dynamic and reliable database, which allows to evaluate over time effectiveness and safety of therapies and their sequences in real life.
“The register data also allowed the observation of subgroups of subjects who need usable numerous samples to be made, such as people over 50 or children to whom the disease is diagnosed. Now we have also included in the register also the clinical folders of people with NMO and Mogad, which are rare pathologies: soon they will allow new studies in Real World on the trend of these diseases and the effectiveness and safety of the new recently authorized drugs “
explains Maria Trojano.
Towards an early diagnosis
The big data revolution is all the more significant in the light of the new diagnostic criteria for the disease, which push towards the description of the picture as a continuous process and establish indicators for one increasingly early diagnosisbased on the integration of biological and functional data.
“The goal of anticipating the diagnosis as well as the progression of the disease must guide the research and the Advocacy in the AISM SM
Mario Alberto Battaglia, Fism president.
Anticipate diagnosis It also means being able to act first with rehabilitation interventions and more effectively contrast the action of the disease both in adults and in the pediatric age. In this sense, always in the logic of sharing information and their optimal management, the Clinical and Imaging Data Resource Promoted by the progressive MS Alliance, of which AISM with its foundation is a founder member and in the manager Board. This platform will provide researchers from all over the world access to anonymized data From 16 Phase III clinical studies, including about 15,000 individual subjects (including clinical data by about 223,000 visits and data from Neuroimaging – RMI – from about 57,000 visits).
