Background
Participant experience is a key determinant of the feasibility and sustainability of clinical registries. Understanding usability, burden, and engagement is critical, particularly for populations with chronic neurological conditions such as degenerative cervical myelopathy (DCM).
Aim
To assess the feasibility of participation in the MYelopathy NAtural History Clinical Quality Registry (MYNAH CQR) using participant-reported experience measures to inform scale-up.
Methods
A cross-sectional survey was conducted among registry participants using Likert-scale and multiple-choice questions through REDCap. Descriptive statistics were performed across four domains – acceptability, demand, implementation, and practicality.
Results
Twenty-five participants completed the entire survey and two completed part of the survey, with a mean age of 63.6 years; 8 (29.6%) were Female, and 19 (70.4%) Male. Participants reported consistently high acceptability across all domains. Participation was easy, with the majority rating both overall participation and questionnaire completion as easy or very easy. Instructions and participation requirements were well understood, and all participants reported instructions were at least mostly clear. Participation burden was low: 88.9% reported the time required as about right or very manageable. Most participants (81.5%) found participation very manageable alongside daily activities, and physical symptoms did not interfere for the majority (77.8%). Comfort and trust were high, with no reports of distress or intrusiveness. Motivation was primarily altruistic or clinician-driven. Willingness to continue participation and recommend the registry was strong. Overall feasibility was rated highly, with 84.6% indicating registry is feasible for people living with DCM.
Conclusion
The registry demonstrated strong feasibility, acceptability, and low participant burden. High usability, clarity, and strong participant endorsement support its scalability and long-term sustainability.