What is on the agenda? About the importance of a collaborative research agenda set by Dutch neuromuscular patients, their families and the neuromuscular field.

Neuromuscular disorders (NMDs) represent a heterogeneous group of conditions with substantial effects on physical functioning, participation, and quality of life throughout the lifespan. Aligning research priorities with the needs of patients, clinicians, and society is essential to ensure relevance and impact. In the Netherlands, collaboration between patients, patient organizations, clinicians and basic researchers have played a pivotal role in shaping research agendas through structured engagement of adults with NMD, and children and parents. Nationwide surveys, filled in by patients, consistently identified the need for faster and less invasive diagnostics, effective symptomatic treatments, improved quality of life, and access to new therapies. Across age groups, fatigue, mobility limitations, pain, and social participation emerged as key challenges, while children specifically emphasized inclusion in school and sports. These patient-identified priorities have informed diagnosis-specific research agendas, guided national funding strategies, and stimulated targeted initiatives focusing on rehabilitation, lifestyle interventions, and participation in physical activity. By integrating patient perspectives into national research strategies, the Dutch collaborative model demonstrates that meaningful, patient-driven agenda-setting can accelerate scientific progress while ensuring outcomes of direct relevance to those affected, and illustrates how collaborative, field-wide approaches may serve as a valuable example for research agenda-setting for other patient organizations.