Clinicians and researchers working in Amyotrophic Lateral Sclerosis (ALS) / Motor Neurone Disease (MND) have recognised the need to capitalise on the potential provided by digital technologies to enhance research and care for some time (1). ALS/MND is a complex, heterogenous condition for which there is no cure (2). Care for a wide range of symptoms is required in a timely fashion and is best provided by multidisciplinary teams (3–5). However, providing efficient care in such a multidisciplinary setting is challenging, with difficulties associated with travel to the clinic and long visit durations often cited (6,7). Furthermore, clinical trials in ALS/MND are challenged by high drop out and insensitive outcome measurement, but novel technologies provide opportunities for enhanced trial design (8). Digital technology enabled solutions provide opportunities for enhanced access to expert care and more efficient trial delivery using telemedicine and remote monitoring, which is broadly supported by patients (9). However, while clinicians and researchers are in the early stages of exploration of digital technologies, there is no consensus on research priorities or best practices for use and implementation for either care or for incorporation into clinical trials. Clinicians and researchers in ALS/MND have come together to develop a ‘Roadmap for Remote Digital Health Technology for Motor Neurone Disease’ (1), which outlines the challenges and provides a framework to address key questions. Coordinated research and consensus is required to address these challenges. This working group will action the priorities outlined in the Roadmap and advance coordinated, harmonised research into the use of digital technologies for both care and research in ALS/MND.
