The Dystonia Coalition Natural History and Biospecimen Repository for Isolated Dystonias

Dystonia is a disorder characterized by excessive involuntary contraction of muscles with repetitive and patterned movements. The isolated dystonias are the most common type of dystonia and include Limb dystonias (like writer's cramp), Cervical dystonia (spasmodic torticollis), Laryngeal dystonias (like spasmodic dysphonia), and Craniofacial dystonias (like blepharospasm). The purpose of this study is to create resources to help learn more about the isolated dystonias, myoclonus dystonia, and dopa-responsive dystonia and to develop and validate various dystonia rating scales.

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Key information

Conditions

Dystonia Dyskinesias Nervous System Diseases Neurologic Manifestations Pathological Conditions, Signs and Symptoms Signs and Symptoms

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Westmead Hospital, Westmead, Australia

About this study

This collaborative, international effort has one primary goal. This is to create a biospecimen repository and associated clinical database to be used as a resource for dystonia and related disease research. 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 video recorded, complete some questionnaires, and donate a blood sample. A study visit will take between 45 minutes and 1 hour. All subjects will be asked to return every 1, 2, 3, or 4 years for a one hour follow-up visit. People may participate in this study without agreeing to participate in the follow-up visits.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

Diagnosed with isolated dystonia or myoclonus dystonia or dopa-responsive dystonia
To be included in laryngeal dystonia group, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis (this voice box exam is not part of the study)

Exclusion criteria

Any evidence of a secondary cause for dystonia (other than myoclonus dystonia or dopa-responsive dystonia)
Less than 2 months since last botulinum toxin injection
Inability to provide informed consent
Significant medical or neurological conditions that preclude completing the neurological exam
Significant physical or other condition that would confound diagnosis or evaluation, other than dystonia or tremor

Treatment and study plan

Primary outcomes

Observational

Time frame: 7 years

There is no primary outcome measure as this is an observational study.

Sponsors and collaborators

Lead sponsor

Emory University

Other

Collaborators

Allergan
Dystonia Study Group
National Institute of Neurological Disorders and Stroke (NINDS)
Office of Rare Diseases (ORD)

Registry information

Official study title

Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia

Acronym: DCP

Important dates

Study start: 2011
Primary completion: 2020
Study completion: 2020
First posted: Jun 15, 2011
Registry last updated: Oct 26, 2020

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

Published trials that share one or more normalized conditions with this study.

Completed