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 and ensure continuity of data collection throughout transition. The network was launched in November 2020 and has gradually supported all sites to meet the desirable standards to take part in this initiative. There are currently 19 sites recruited: University College London Hospitals NHS Foundation Trust, St George's University NHS Foundation Trust, King's College Hospital NHS Foundation Trust, The Northern Care Alliance NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University Hospitals Birmingham NHS Foundation Trust, Sheffield Teaching Hospitals NHS Foundation Trust, Oxford University Hospitals Trust, North Bristol NHS Trust, Nottingham University Hospitals Trust, Cardiff and Vale University Health Board, NHS Greater Glasgow and Clyde, Cambridge University Hospitals NHS Foundation Trust, The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, The Walton Centre NHS Foundation Trust, Bradford Teaching Hospitals NHS Foundation Trust, The Newcastle upon Tyne Hospitals NHS Foundation Trust, South Eastern Health and Social Care Trust, South West Wales Neuromuscular Service in Swansea. The clinical care of adults with SMA was not structured or coordinated, patients were often not seen regularly at specialized sites and SoCs were not implemented equally geographically. A total of 256 participants had been recruited since the start of the initiative to now. 42% are female participants with a median age of 33 (Range 17-77). A total of 216 are participants receiving SMA specific treatment (64% on Risdiplam). The Adult SMA REACH clinical network has created a clear communication pathway between industry, healthcare professionals, academics and patient advocacy groups; allowing current data and knowledge to be easily shared. The registry completes the communication pathway by disseminating information to patients. Altogether, will promote better access to care and overall management and facilitate consistent data collection for the adult population living with SMA in the UK. 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 and ensure continuity of data collection throughout transition. The network was launched in November 2020 and has gradually supported all sites to meet the desirable standards to take part in this initiative. There are currently 19 sites recruited: University College London Hospitals NHS Foundation Trust, St George's University NHS Foundation Trust, King's College Hospital NHS Foundation Trust, The Northern Care Alliance NHS Foundation Trust, University Hospital Southampton NHS Foundation Trust, University Hospitals Birmingham NHS Foundation Trust, Sheffield Teaching Hospitals NHS Foundation Trust, Oxford University Hospitals Trust, North Bristol NHS Trust, Nottingham University Hospitals Trust, Cardiff and Vale University Health Board, NHS Greater Glasgow and Clyde, Cambridge University Hospitals NHS Foundation Trust, The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust, The Walton Centre NHS Foundation Trust, Bradford Teaching Hospitals NHS Foundation Trust, The Newcastle upon Tyne Hospitals NHS Foundation Trust, South Eastern Health and Social Care Trust, South West Wales Neuromuscular Service in Swansea. The clinical care of adults with SMA was not structured or coordinated, patients were often not seen regularly at specialized sites and SoCs were not implemented equally geographically. A total of 256 participants had been recruited since the start of the initiative to now. 42% are female participants with a median age of 33 (Range 17-77). A total of 216 are participants receiving SMA specific treatment (64% on Risdiplam). The Adult SMA REACH clinical network has created a clear communication pathway between industry, healthcare professionals, academics and patient advocacy groups; allowing current data and knowledge to be easily shared. The registry completes the communication pathway by disseminating information to patients. Altogether, will promote better access to care and overall management and facilitate consistent data collection for the adult population living with SMA in the UK.