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Abstract:

Respiratory failure, malnutrition, aspiration pneumonia, and dehydration are the precursors to mortality in ALS. Loss of natural communication is considered one of the worst aspects of ALS. This first study to test the feasibility of a music therapy protocol for bulbar and respiratory rehabilitation in ALS employs a mixed-methods case study series design with repeated measures. Newly diagnosed patients meeting the inclusion criteria were invited to participate, until the desired sample size (n = 8) was achieved. The protocol was delivered to participants in their homes twice weekly for six weeks. Individualised exercise sets for independent practice were provided. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation and personal impressions) were collected. Bulbar and respiratory changes were objectively measured. Results. A high recruitment rate (100%), a high retention rate (87.5%) and high mean adherence to treatment (95.4%) provide evidence for the feasibility of the study protocol. The treatment was well tolerated. Mean adherence to the suggested independent exercise routine was 53%. The outcome measurements to evaluate the therapy-induced change in bulbar and respiratory functions were defined. Findings suggest that the protocol is safe to use in early- and mid-stage ALS and that music therapy was beneficial for the participants’ bulbar and respiratory functions. Mean trends suggesting that these functions were sustained or improved during the treatment period were observed for most outcome parameters: Maximal Inspiratory Pressure, Maximal Expiratory Pressure, Peak Expiratory Flow, the Center for Neurologic 51ÁÔÆæÈë¿Ú—Bulbar Function Scale speech and swallowing subscales, Maximum Phonation Time, Maximum Repetition Rate—Alternating, Maximum Repetition Rate—Sequential, Jitter, Shimmer, NHR, Speaking rate, Speech–pause ratio, Pause frequency, hypernasality level, Time-to-Laryngeal Vestibule Closure, Maximum Pharyngeal Constriction Area, Peak Position of the Hyoid Bone, Total Pharyngeal Residue C24area. Conclusion. The suggested design and protocol are feasible for a larger study, with some modifications, including aerodynamic measure of nasalance, abbreviated voice sampling and psychological screening.

Abstract:

Respiratory failure, malnutrition, aspiration pneumonia and dehydration contribute to mortality in ALS / MND, and loss of verbal communication impacts quality of life. There are few interventions that help with the management of these symptoms alongside pharmacological ones. Neurologic music therapy protocols, which are biomedical interventions, have been demonstrated to be effective for the treatment of human neurodegenerative disorders, but less so with ALS.
Two case studies from a larger, published ALS study were selected for this new report to provide an insight into the practical aspects of music therapy treatment. The home-based protocol was designed to sustain bulbar and respiratory functions of persons with early and mid-stage onset. It was delivered to all participants twice-weekly for six weeks as a part of a 16-week ABA mixed methods study. Feasibility data (recruitment, retention, adherence, tolerability, self-motivation, personal impressions) and 34 biomedical outcome parameters for bulbar and respiratory changes were collected. The two studies highlight the differences in therapy process between participants – one with a spinal onset, slow progression ALS and another with a bulbar onset, rapid progression.
In both cases, music therapy was tolerated well and perceived as pleasant, although moderately challenging. For both participants, developing the sense of agency played an essential role in the therapy process. Minor treatment protocol modifications were needed. Positive changes in the objective measures of respiration, cough, speech and swallowing were observed.
Suggested individual adaptations of the experimental music therapy protocol included modifications of sitting posture, breathing technique, consonant changes in singing exercises, additional pauses and stretching, and changes to preferred song therapeutic performance. A pilot study utilising the modified protocol is called for, followed by an RCT to assess the clinical effectiveness of the innovative MT treatment.

Abstract:

Digital citizen science (DCS) operates as a socio-technical mode of public participation in research. While many DCS participants self-identify as neurodivergent, their perspectives have rarely been treated as a distinct design lens. Drawing on a large-scale 2024 survey of Zooniverse volunteers and a 2025 participatory international collaboration with 89 adult neurodivergent citizen scientists and allies contributing across multiple DCS platforms, this study develops an actionable framework of accessibility guidelines for neuro-inclusive DCS. Thematic text analysis of two qualitative datasets (84 working-group contributions and 1,669 de-identified 2024 survey responses) identified recurring accessibility barriers and organised 91 recommended features into 11 functional domains spanning participation from onboarding and task engagement to interface customisation, moderation, safety, and outreach. The framework positions neuro-inclusive accessibility as a methodological component shaping participation, retention, and research practice. Grounded in neurodivergent lived experience, the guidelines create pathways for more flexible participation across diverse DCS contexts.