P229 Adult SMA REACH: a clinical network to standardize the collection of data to enable integrated and longitudinal analysis of clinical and patient-reported data

Adult SMA REACH is a longitudinal observational study collecting clinical data and outcome measures for Spinal Muscular Atrophy (SMA) patients aged ≥16 years with genetically confirmed 5q SMA. The Adult SMAREACH network was set up in alongside SMA REACH UK and the UK SMA Patient Registry. The integration of the three UK SMA databases will advance our understanding of the impact of care and new therapies on the natural history of the disease a nd ensure continuity of data collection throughout transition.

Source: Neuromuscular Disorders - October 1, 2023 Category: Neurology Authors: R Muni Lofra, S. Segovia, T. Elwell, J. Yau, L. Murphy, C. Blewitt, S. Fitzsimmons, C Marini Bettolo, Adult SMA REACH Network Source Type: research