Dystonia Coalition Projects (DCP)

This study is currently recruiting participants. (see Contacts and Locations)
Verified December 2015 by Emory University
National Institute of Neurological Disorders and Stroke (NINDS)
Office of Rare Diseases (ORD)
Dystonia Study Group
Information provided by (Responsible Party):
Hyder A. Jinnah, MD, PhD, Emory University
ClinicalTrials.gov Identifier:
First received: June 2, 2011
Last updated: December 3, 2015
Last verified: December 2015

June 2, 2011
December 3, 2015
January 2011
October 2017   (final data collection date for primary outcome measure)
Observational [ Time Frame: 7 years ] [ Designated as safety issue: No ]
There is no primary outcome measure as this is an observational study.
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Complete list of historical versions of study NCT01373424 on ClinicalTrials.gov Archive Site
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Dystonia Coalition Projects
Natural History and Biospecimen Repository for Dystonia; Comprehensive Rating Tools for Cervical Dystonia; Validity & Reliability of Diagnostic Methods & Measures of Spasmodic Dysphonia
Dystonia is a disorder characterized by excessive involuntary contraction of muscles with repetitive and patterned movements. The primary focal 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 primary focal dystonias and to develop and validate various dystonia rating scales.

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. A study visit will take between 45 minutes and 1 hour depending upon which portions of the study a subject completes. A subset of subjects will be asked to return no more often than once a year for a one hour follow-up visit.

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Retention:   Samples With DNA
Whole blood, DNA, white blood cells, cell lines
Non-Probability Sample
People with dystonia are eligible to participate as long as they are above age 18 and fit the eligibility criteria. The coordinator at the site you contact can tell you more about this.
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  • Cervical dystonia
    People diagnosed with cervical dystonia
  • Laryngeal dystonia
    People diagnosed with laryngeal dystonia
  • Other voice disorders
    People diagnosed with a voice disorder other than laryngeal dystonia
  • Cranial dystonia
    People diagnosed with cranial dystonia
  • Oromandibular dystonia
    People diagnosed with oromandibular dystonia
  • Limb dystonia
    People diagnosed with limb dystonia
  • All other dystonias
    People diagnosed with any isolated dystonia not listed in descriptions of other cohorts
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*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
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October 2017   (final data collection date for primary outcome measure)

Inclusion Criteria:

  • Diagnosed with primary dystonia
  • To be included in laryngeal dystonia group, nasolaryngoscopy (voice box exam) must have been completed to confirm diagnosis

Exclusion Criteria:

  • Any evidence of a secondary cause for dystonia
  • Less than 2 months since last botulinum toxin injection
  • 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
18 Years and older
Contact: Ami R Rosen, MS, CGC 404-727-3381 arosen3@emory.edu
United States,   Australia,   Canada,   France,   Germany,   Italy,   United Kingdom
IRB00046266, U54TR001456, RDCRN#6301, U54NS065701
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Hyder A. Jinnah, MD, PhD, Emory University
Hyder A. Jinnah, MD, PhD
  • National Institute of Neurological Disorders and Stroke (NINDS)
  • Office of Rare Diseases (ORD)
  • Allergan
  • Dystonia Study Group
Principal Investigator: H. A. Jinnah, MD, PhD Emory University
Emory University
December 2015

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP