This is an observational study in individuals with isolated (or primary) dystonia that involves more than one body region. The purpose of the study is to collect detailed information to help your physician and other researchers understand how dystonia impacts your and other patients' lives and how the disease changes over time. The study may also help researchers better understand the clinical scales that are commonly used to evaluate dystonia symptoms and how they affect various areas of life such as well-being, pain, relationships and social interactions, and progress over time. Because this is an observational study, you will not receive any interventional treatment in the study.
The primary goal of this observational study is to further characterize and quantify disease severity and impact (including change over time) in individuals with either segmental, multifocal, or generalized dystonia in a structured manner, utilizing and comparing various well-known scales. In addition, medication history and any intercurrent events related to the participant's health (such as, but not limited to, hospitalizations, new diagnoses, etc.) will be captured. This study will provide standardized data to support planned future interventional clinical studies in this patient population and will provide a greater understanding of the population under study and the performance of clinical ratings scales.
Study Type
OBSERVATIONAL
Enrollment
200
Vima Site #004
Scottsdale, Arizona, United States
RECRUITINGVima Site #028
Sun City, Arizona, United States
NOT_YET_RECRUITINGVima Site #010
Aliso Viejo, California, United States
RECRUITINGVima Site #030
Los Angeles, California, United States
Burke-Fahn-Marsden (BFM) Dystonia Rating Scale
The BFM was developed to quantitatively assess primary dystonias (Burke 1985). It is composed of 2 subscales: a movement subscale, based on the clinician's evaluation of the patient in nine body areas, and a disability subscale, based on the participant's report of disability in activities of daily living.
Time frame: From start of treatment through 4 months
Toronto Western Spasmodic Torticollis Rating Scale (TWSTRS-2)
The TWSTRS-2 scale is used to assess cervical dystonia. It includes 3 subscales that evaluate symptom severity, disability, and pain. The severity scale is clinician-rated and the disability scale is patient-rated based on 6 items related to work, activities of daily living, driving, reading, watching TV, and outside activities.
Time frame: From start of treatment through 4 months
Clinical Global Impression of Severity (CGI-S)
The CGI-S score is used by the Investigator to determine, in a global sense, how severe the patients' blepharospasm is in the context of other blepharospasm patients. Increased scores indicate more severe symptoms.
Time frame: From start of treatment through 4 months
This platform is for informational purposes only and does not constitute medical advice. Always consult a qualified healthcare professional.
Vima Site #022
Palo Alto, California, United States
RECRUITINGVima Site #019
Englewood, Colorado, United States
RECRUITINGVima Site #003
Boca Raton, Florida, United States
RECRUITINGVima Site #009
Gainesville, Florida, United States
RECRUITINGVima Site #008
Miami, Florida, United States
NOT_YET_RECRUITINGVima Site #031
Orlando, Florida, United States
NOT_YET_RECRUITING...and 19 more locations