254th ENMC international workshop. Formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. Virtual meeting 28 – 30 January 2022

Note: Funding Information: 29 clinical researchers from 12 different countries (Belgium, Canada, Denmark, France, Germany, Greece, Italy, Netherlands, Poland, Spain, Switzerland, UK), 2 SMA patients, one representative of a patient advocacy group and 2 industry representatives from Biogen and Roche met for a virtual workshop in the weekend of 28–30 January 2022. The Workshop aimed at the formation of a European network to initiate a European data collection, along with development and sharing of treatment guidelines for adult SMA patients. This workshop was supported by the 10 ENMC partner organisations.