Camp-Based Research in Neuromuscular Disorders: A Novel Framework for Natural History Data Collection

Abstract

Neuromuscular camps–dedicated retreats for individuals with conditions such as Duchenne Muscular Dystrophy and Charcot-Marie-Tooth disease–represent a profoundly underutilised resource for rare disease research. These camps provide unparalleled access to authentic, lived experiences that are rarely captured in clinical or support group settings. Within this environment, challenges surrounding mobility, personal care, socialisation, and energy budgeting are navigated organically, offering a holistic view of adaptation and resilience. Integrating prospective research methodologies, such as unobtrusive observational studies, wearable technology, and gamified assessments, into the camp setting could yield rich, real-world data without compromising the core purpose: joy, connection, and empowerment. This paper argues that neuromuscular camps, if approached ethically and collaboratively, can serve as natural history platforms, shaping future research and interventions while preserving the essential spirit of these transformative experiences. This paper proposes a hybrid model that integrates research methods such as wearable technology, narrative tools, and gamified assessments into camp life without compromising the primary ethos of joy and empowerment. Neuromuscular camps, if approached collaboratively and sensitively, can meaningfully reshape how we collect and interpret data in neuromuscular disease research.