[PND29] Validation of the Huntington clinical self-reported instrument (H-CSRI), a clinimetric patient assessed scale for patients with Huntington’s disease
2011 Value in health
Clay, E. | Dorey, J. | Toumi, M. | Tedroff, J. | Squitieri, F. | De Nicola, N. | Verny, C. |
Huntington Disease, instrumentation, patient reported outcomes, poster, scale,
Huntington’s disease (HD) is a rare neurodegenerative disease affecting motor, cognitive and psychological function. Data collection is difficult because of the low prevalence and the small number of specialized centers. The creation of a specific self-administered questionnaire covering various clinical aspects of the disease would make the HD-patient clinical data collection easier. Such an instrument also offers the advantage of allowing a remote follow-up and getting information on the development of motor, functional and behavioral disorders of HD patients perceived by the patient himself.