Cindy Stern, Danielle Pollock, Timothy Barker, Grace McKenzie Holland, Sabira Hasanoff, Nipun Shrestha, Ines Semendric, Lemma Negesa Bulto, Sitasma Sharma, Anna Fragkoudi, Sebastian Cole Facchin-Young, Abigail Molly Day-Sharman, Lara Stollery, Jay Beasley-Hall, Camille Schubert, Lynne Giles, Tracy Merlin, Steve Vucic, Jo Whitehouse, Zachary Munn
INTRODUCTION: Motor neurone disease (MND) is a rare but devastating neurodegenerative condition that results in progressive muscle weakness, disability, and eventual respiratory failure. In Australia, the impact of MND is significant, and there is a pressing need for a high-quality, locally relevant guideline to support equitable, person-centred care.
QUESTIONS: This guideline aims to address key clinical and care-related questions that arise across the MND trajectory. It will identify the most pressing topics and uncertainties in MND management through interest holder consultation and structured prioritisation.
METHODS: The guideline will be developed using the GRADE (Grading of Recommendations, Assessment, Development and Evaluation) approach and will align with standards set by the National Health and Medical Research Council (NHMRC) and the Guidelines International Network (GIN). Governance will include a multi-tiered structure with lived experience representation. Implementation planning and evaluation will be integrated throughout, with a planned transition to a living guideline model supported by an ongoing evidence surveillance strategy.