The third ELA/MLD Research Group consortium was held in Paris on Friday 21 June 2019.
The ELA/MLD Research Group consortium was born at the end of the symposium organised by ELA International in Luxembourg in December 2017. At the initiative of Dr. Caroline Sevin, paediatrician at the reference centre for rare leukodystrophies and leukoencephalopathies at the Kremlin-Bicêtre hospital, a cycle of four meetings was initiated. The aim of this consortium is to establish a balance sheet on the management of the disease in the different European countries and to obtain a consensus to move towards new therapeutic options and combined treatments, which could lead to a clinical trial. This consortium is the result of a partnership between Dr. Caroline Sevin and ELA International.
Two meetings have already been held in Paris, in September 2018 and March 2019. They have enabled doctors to take stock of all the knowledge about the disease and to compare their experiences. At the end of the second meeting, the experts worked together to conduct preliminary experiments. The results answer certain questions and are a prelude to closer collaboration between their teams.
The third meeting was held on Friday 21 June. It again brought together some fifteen European researchers, experts in metachromatic leukodystrophy (MLD).
This day provided an opportunity to take stock of the state of neonatal screening for metachromatic leukodystrophy in Europe, to discuss diagnosis and treatment, and the harmonisation of protocols for the management of patients suffering from MLD in their centres of expertise. The discussions were numerous and rich.
A final meeting is scheduled for November, at the end of which common recommendations for the management of patients with MLD in the different European countries could be considered, possibly leading to a publication.
Dr. Caroline Sevin and all the participants stressed the importance of these very fruitful meetings and thanked the commitment and support of ELA International, which were crucial for the success of this project.