Unmet Needs Among Patients With Isolated REM Sleep Behavior Disorder (iRBD) and Their Significant Others

Isolated REM Sleep Behavior Disorder (iRBD) is a parasomnia characterized by the loss of normal REM sleep atonia and the presence of dream-enactment behaviors. Over the last two decades, increasing evidence has shown that iRBD represents one of the strongest clinical prodromal markers of synucleinopathies, including Parkinson's disease, dementia with Lewy bodies, and multiple system atrophy. As a consequence, individuals diagnosed with iRBD often face uncertainty and psychological distress related to the potential future development of neurodegenerative disease.

Despite growing scientific and clinical interest in iRBD, relatively little attention has been dedicated to the experiences, informational needs, and psychosocial burden associated with the diagnosis, both for patients and for their significant others or caregivers. Understanding these aspects is essential for improving patient-centered care, communication strategies, and support services.

The present study is a multicenter cross-sectional observational study designed to investigate the unmet needs, perceived challenges, and psychosocial impact associated with iRBD. The study involves several sleep and movement disorders centers and aims to collect structured data from individuals diagnosed with iRBD and from their significant others.

Participants will complete structured questionnaires administered through an online survey platform. The questionnaires collect information on multiple domains, including disease-related knowledge, perceived informational needs, interactions with healthcare services, emotional well-being, quality of life, and concerns about disease progression. Significant others or caregivers will complete a parallel questionnaire addressing caregiving experiences, perceived burden, informational needs, and support resources.

The data collected in this study will provide important insights into the real-world experiences of individuals living with iRBD and their families. The results may contribute to the development of targeted educational resources, improved clinical communication strategies, and support interventions aimed at addressing the unmet needs of this population.

Inclusion criteria

• Patients diagnosed with iRBD according to the International Classification of Sleep Disorders, 3rd Edition (ICSD-3) criteria.
• Patients who have had a follow-up visit within the previous 12 months.
• Patients who provide informed consent to participate in the study.
• Partners/family members of patients with iRBD who accept to participate.

Exclusion criteria

• Patients with RBD who have already phenoconverted to a neurodegenerative disorder.
• Patients or partners/family members without access to an email address.