•Worldwide, data collections and registries, such as TREAT-NMD patient registries, iSMAC and SMArtCARE have been implemented as important tools to get more insight in the natural history of spinal muscular atrophy (SMA) in treatment-naïve patients, especially at older ages, and patients treated with disease modifying therapy (DMT).

•Specific recommendations for the transition of SMA patients from pediatric to adult care were discussed.

•The group agreed on the need of a follow-up workshop on adult guidelines and development of standards of care.

•Future activities of the consortium include access to treatment across Europe, implementation of new outcome measures and patient reported outcomes, (PROs), and a European data collection.