The first preliminary data from the COVID-19 platform and multiple sclerosis (MS), the pilot project for the collection of clinical information on people with MS who developed COVID-19 infection, published on Lancet Neurology.
To date, 78 MS Italian clinical centers have contributed to the MuSC-19 platform, activated on 14 March 2020, as well as 28 centers from 15 other countries. The data published are focused on 232 people with MS with COVID-19 symptoms; the virus test was performed in 58 people, with positivity in 57. In this cohort there were 5 deaths, 2% of the total, another patient - in addition to the 5 - was hospitalized in intensive care unit and 17 other patients were hospitalized in non-intensive wards. In 209 patients the virus infection was limited to a varied combination of symptoms that did not involve hospitalization.
All deaths concerned people with particular frailty linked to disability, comorbidities and / or age. 90% of people were being treated with Disease Modifying Treatments (DMTs). To date, no risk element related to therapy has been found. But, from these data, it’s not possible to give any information on the risk associated with a specific treatment. These data must be taken as preliminary. "At the moment, these results seem to be quite reassuring for most people with MS" underlines Professor Marco Salvetti of Sapienza University, Sant'Andrea Hospital, Rome. They are in line with what the Italian Society of Neurology, together with AISM and the International Federation of MS, has already published on the management of multiple sclerosis. “Moreover - continues professor Salvetti - it is confirmed that people with MS with comorbidity and disability combined with older age are exposed to the risk of a worse evolution of the disease. These people therefore require special care in preventing infection. "
"The monitoring and updating of the data will continue for the duration of the epidemic. The prevalence of MS among the cases that developed COVID-19 will also be provided, when will be possible to verify that all virus-positive MS cases are detected " underlines Professor Francesco Patti of the University of Catania, coordinator of the Italian Society of Neurology (SIN) Multiple Sclerosis Study Group.
“Among western countries, Italy was the first to experience the effects of the COVID-19 pandemic," says doctor Nicola de Rossi neurologist of the Civil Hospitals of Brescia, P.O. Montichiari (BS) "The overall impact throughout Italy has been tragic, as is known, particularly in northern Italy. However, this has allowed Italian researchers, in particular the medical researchers of these most affected regions, to study the COVID-19 infection and these are the first data available in the world on MS and COVID-19."
The aim of the ongoing MuSC-19 international initiative is to provide data to help define a medium and long-term strategy for people with MS in the various stages of evolution of this pandemic, with particular regard to the different therapies followed. Furthermore, the information deriving from this study could also be useful for other pathologies. "In this scenario - says Mario Alberto Battaglia, President of the Italian Multiple Sclerosis Foundation – in order to face the most urgent problems and to plan a long-term response that the COVID-19 pandemic imposes on the life and health care of people with MS, the AISM with its Foundation (FISM) and the SIN Study Group on MS have launched a Program to deal with the emergency in the short, medium and long term, also with regard to public health and advocacy issues since the first weeks of the epidemic".
“The program – says Gioacchino Tedeschi, President of the Italian Society of Neurology - was framed according to the suggestions received from a group of neurologists operating in areas of high emergency and from Italian MS Society representatives. This research is also possible thanks to AISM and the network of clinical reference centers for MS in Italy. This national network is a unique care model on the international scene, which has been active in Italy since 1996 and has been instrumental to address MS scientific matters in a collective manner nationally ".
The MuSC-19 platform, donated by Roche, was created to deal with the emergency and collect data on COVID-19 and MS cases. "The platform is accessible, upon registration, to the whole scientific community interested in collecting this type of data, regardless of their nationality and willingness to participate in this or other collateral initiatives aimed to collect clinical data and biological samples "says Prof. Maria Pia Sormani of the University of Genoa, which manages the MuSC-19 platform. Data on COVID-19 infection in people with MS have been and are collected from clinical centers through an electronic medical record. The basic dataset includes clinical and demographic characteristics, together with information on disease-modifying treatments. To be included, patients must have symptoms and signs of COVID-19 infection, with or without a positive test (nasal and pharyngeal swabs). The MuSC-19 platform is linked with the Italian Multiple Sclerosis Registry, which currently collects data from more than 60,000 people with MS in Italy. This will allow important epidemiological information to be derived.
“For people with MS it is important to have indications from scientific research, since they have a concrete impact on treatment and life choices. But people with MS bring their experiences of the disease to research: for this reason, I invite all people who have faced home infection to tell their experience to researchers, also through their general practitioners "concludes Francesco Vacca, National President of AISM.
The Multiple Sclerosis and COVID-19 - MuSC-19 platform collects international data linked to the Italian Multiple Sclerosis Registry. It is a call to action to all the countries of the world. Among the European countries Italy was the first to be affected by the COVID-19 infection and MuSC19 was launched to respond immediately to the need to collect clinical data referring to people with MS who have developed COVID19.
What is MS.
Chronic, unpredictable and disabling, multiple sclerosis is one of the most serious diseases of the central nervous system. In Italy 126 thousand people suffer from multiple sclerosis, 3,400 new cases every year: 1 diagnosis every 3 hours. 50% of people with MS are young and not yet 40 years old. MS affects women twice as much as men. The cause and final cure have not been found yet but thanks to the progress made by scientific research, there are therapies and treatments able to slow the course of multiple sclerosis and improve people's quality of life. This is why it is essential to support research.
Who is the Italian MS Society (AISM).
AISM, together with its Foundation (FISM) is the only organization in our country that for over 50 years has intervened 360 degrees on multiple sclerosis by directing, supporting and promoting scientific research, helping to increase the knowledge of multiple sclerosis, and supporting the needs of people with MS, promoting services and treatments necessary to ensure a better quality of life and affirming their rights.
Who is the Italian Society of Neurology (SIN).
SIN has over 3000 neurologists among its members and has the institutional purpose of promoting, in Italy, the advancement of knowledge of neurological diseases, in order to promote the development of scientific research, improve training, update specialists and raise professional quality in assisting people affected by morbid conditions involving the nervous system.