ACT4ALS-MND : Alliance on Clinical Trials for ALS-MND

The ACT4ALS-MND network consists of 10 Rare Disease Reference Centres (CRMR) and 12 Rare Disease Resource and Competence Centres (CRCMR). Created in 2020 under the impulse of the FilSLAN healthcare network dedicated to ALS (Amyotrophic Lateral Sclerosis) and motor neurone diseases (MND), it obtained F-CRIN (French Clinical Research Infrastructure Network) accreditation in 2022 and aims to be the one-stop shop for clinical research on ALS and MND in France by supporting project sponsors in setting up their studies and centralizing information relating to trials conducted in ALS expert centres. Its aim is to facilitate the participation of centres and the inclusion of patients in clinical trials (therapeutic and pathophysiological trials, European and international collaborative studies). To achieve this, the network is deploying 4 complementary missions in support of ALS-MND clinical research teams. Information and communication -Monitoring calls for projects -Dissemination of information to network members -International communication Administrative support -Support for budget grids - Advice and support for regulatory processes Expertise -Thematic and scientific expertise (pathophysiology, pharmacology, biomarkers, gene therapy, etc.) -Clinical and methodological expertise (ALS expert centres, CICs) -Training (GCP, pathology) Investigation support -Assessment of feasibility within the network -Help in selecting centres -Follow-up/support for study recruitment. ACT4ALS-MND has been awarded the F-CRIN label, a nationwide infrastructure for clinical research. Approved by the ANR as part of the ‘Investissements d'avenir’ programme, and supported by the Ministry of Health, its mission is to boost the performance of French clinical research and its attractiveness at European and international level.