It is a huge project which was launched Thursday at the Ministry of Health and which raises immense hope for some 8,000 patients with ALS and their loved ones. The research program called Pulse aims to build a database including genetic, biological, electrophysiological and imaging on this neurological pathology which affects 8,000 people in France and whose causes are unknown. The Charcot’s diseaseis characterized by the progressive degeneration and death of motor neurons responsible for the functioning of muscles, resulting in paralysismembers.
This new large-scale study will mobilize 1000 patients, 100 healthy controls and 300 neurological witnesses over 25 years of age for 10 years. The ambition is to match the means put in place since the researchers hope to be able to develop targeted treatments in the long term. “We hope that all the information that will be collected in this way will allow researchers to better understand the causes of the disease and its mechanisms of development. Within a few years, this could lead to treatments that will perhaps be more targeted. according to the individual characteristics of the patients “, explains to The cross Marie-France Cazalère-Fouquin, president of ARSLA, the main association for the fight against the disease.
A need for financing to make the project a success
The challenge is great because today there is no cure for this disease. Just one drug slows down the disease. Other therapeutic solutions can relieve symptoms to improve the quality of life of patients. “For 25 years, all therapeutic trials conducted on the disease have failed, continues the president of ARSLA.”
Funds are still needed to finance this project estimated at 1.3 million euros. 750,000 euros have already been collected, the ARSLA association is launching a call for private donations. The first results of the study should be released in 3 years.
