This collaborative, international effort has two primary goals. The first is to create a biospecimen repository and associated clinical database to be used as a resource for dystonia and related disease research. The second goal is to create and validate various rating scales for focal dystonias to be used during a typical clinical examination. Across sites, the investigators hope to enroll at least 5,000 adult patients.
Subjects of this study will be asked to complete a neurological exam which will be videotaped, complete some questionnaires, and donate a blood sample. Subjects with laryngeal dystonia and voice disorders will also be asked to have a transnasal laryngoscopy (an exam of the voice box) where the subject has a flexible tube passed through their nose and into the throat to view the throat and voice box. A study visit will take between 45 minutes and 4 hours depending upon which portions of the study a subject completes. A subset of subjects will be asked to return annually for a one hour visit.
- Diagnosed with primary dystonia OR
- Diagnosed with voice disorders like muscle tension dysphonia, psychogenic dysphonia, and vocal fold paresis or paralysis
- To be included in laryngeal dystonia or voice disorder groups, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis
- Any evidence of a secondary cause for dystonia
- Less than 2 months since last botulinum toxin injection
Criteria that will keep people from participating in some research activities:
- Any surgical treatment for dystonia
- Significant medical or neurological conditions that preclude completing the neurological exam
- For those with voice disorders and laryngeal dystonia, significant medical or neurological conditions that preclude completing a nasolaryngoscopy
- Significant physical or other condition that would confound diagnosis or evaluation, other than dystonia or tremor
- Being on varying doses of certain medications within the past one month
Last updated: 05/06/2013