SLA, National Register and survey to enhance the fight

Patient data and information are crucial for orienting research and helping the health system to deliver services that are ever closer to needs.

    With this aim, the National Register of patients with Amyotrophic Lateral Sclerosis (ALS) and the "What ALS Wants?" Survey were born.

The two projects will be illustrated on 25 February during the

    ALS is a highly disabling progressive neurodegenerative disease for which there is still no cure.

It is estimated that in Italy there are about 6,000 people living with this disease.

Both known and unknown genetic and environmental mechanisms and factors are involved in the etiology of ALS.

This is why deepening every aspect is important.

    The National SLA Register was created by AISLA, in collaboration with the Association of the Registry of Neuromuscular Patients.

The registry was subsequently implemented with a survey to be conducted by the Mario Negri Institute aimed at providing a clear picture of the needs and priorities of ALS patients, their caregivers and doctors.

    To illustrate the two projects during 'ANSA Incontra' will be, among others, Mario Sabatelli, president of the AISLA medical scientific commission and adult area manager of the NeMO Clinical Center of the Gemelli Polyclinic in Rome;

Christian Lunetta, coordinator of the National SLA Registry;

MD AISLA and responsible for the ALS area of ​​the NeMO Clinical Center of the Niguarda Hospital in Milan;

Elisabetta Pupillo, head of the Epidemiology of Neurodegenerative Diseases Unit of the Mario Negri Institute in Milan. 

In collaboration with:

ANSA Incontra