Telehealth in MND-Research: An online platform enabling research participation for people living with motor neuron disease in the United Kingdom (Preprint)

BACKGROUND There are numerous barriers to recruiting and engaging people living with motor neuron disease (MND), or amyotrophic lateral sclerosis, in research studies. Some MND research requires in-person participation, which can create obstacles to recruitment and engagement. A digital research platform can enhance access to MND research and improve data integrity. OBJECTIVE To introduce and describe the development of the Telehealth in MND-Research platform (TiM-Research) developed by the UK MND Research Institute (UKMNDRI). TiM-Research is a self-sign-up platform that connects people living with MND with research opportunities and collects longitudinal patient-reported outcome measures. METHODS We describe the development of the TiM-Research platform, including functionality, data management and governance. To explore the acceptability of the TiM-Research platform and identify potential barriers and benefits of using a digital research platform for remote MND research, semi-structured qualitative interviews were conducted with key stakeholders (people living with MND, informal carers, researchers, and industry professionals). Data were analysed using thematic analysis. RESULTS In the 12 months since its launch in December 2024, 100 people with MND have enrolled in TiM-Research. Nine research studies have used TiM-Research for remote recruitment. To date, 3,065 patient-reported outcome measures have been collected in the longitudinal dataset. Interviews with 28 stakeholders revealed four main themes: 1) Challenges in MND research: the impact on deterioration of health and concerns about potential burden for participants, even in remote research, due to the number of different opportunities presented. 2) Benefits of the TiM-Research platform to overcome these challenges: a centralised system to standardise recruitment and data collection, and capture valuable longitudinal changes. 3) Implementation: the need for clear guidelines, robust regulations, data ownership definitions, and long-term sustainability. 4) Future recommendations for TiM-Research usage: the need for the platform to support hybrid data collection, integrating both remote and in-person methods. CONCLUSIONS Stakeholders supported the need for TiM-Research, recognising its potential to overcome key barriers in MND research. However, they raised concerns about the potential measurement burden that must be considered in the future. The platform is seen as a promising, helpful tool for advancing research and democratising participation. Future work will evaluate and refine the platform to ensure accessibility and ethical, sustainable operation.