Dystonia Coalition Projects-3
Summary
What is Dystonia?
Dystonia is characterized by excessive pulling of muscles leading to twisting movements or abnormal postures. Patients with dystonia can have virtually any part of their bodies affected.
What is the Dystonia Coalition?
The Dystonia Coalition, a part of the Rare Diseases Clinical Research Network, is an international collaboration of medical researchers and patient advocacy groups with a mission to advance the pace of clinical and translational research in the dystonias to find better treatments and a cure.
What is the purpose of this research?
This research includes four related projects each having different but overlapping goals. The Natural History (NH), Objective Measures (OM), and Biobank (BB) projects go together because they are related. The Patient-Centered Outcomes (PCO) project is optional and depends on the type of dystonia you have and its treatment.
•The aim of the NH Project is to learn more about how dystonia may progress over time and what causes dystonia.
•The aim of the OM project is to develop tools to measure the severity of symptoms objectively.
•The aim of the BB project is to create a collection of blood samples for analysis.
•The aim of the PCO project is to develop an app to monitor symptom severity
Your participation is therefore very important to the success of this study as it will allow us to get a better understanding of this condition.
Eligibility
Eligible gender: Male, Female, Transgender, Other
Eligible ages: 18 to 100
Inclusion criteria:
Who can participate in the NH-OM-BB Projects?
You must be diagnosed with one of the following isolated dystonias:
1. Focal dystonia, including:
a) Cranial dystonia/Meige Syndrome (including blepharospasm)
b) Jaw or tongue dystonia
c) Laryngeal dystonia (including spasmodic dysphonia) with diagnosis confirmed by nasolaryngoscopy
d) Cervical dystonia (spasmodic torticollis)
e) Limb dystonia (including writer’s cramp and musician’s dystonia)
2. Segmental or multifocal dystonia
3. Generalized dystonia
4. Hemi-dystonia
• Your last injection of botulinum toxin should be at least 2 months prior to study visit.
Who can participate in the PCO Project?
• You must have one of the isolated focal dystonias including cervical dystonia, blepharospasm, or laryngeal dystonia
• You must be 18 years or older
• You must agree to participate in NH-OM-BB studies
• You must be fluent in English
• You must complete questionnaires on a hand-held device, such as smartphone
Unaffected family members are also eligible to participate.
Exclusion criteria:
• Unable to give written informed consent and/or assent
• Dystonia due to brain lesions apart from selected populations noted above
• Significant physical or other condition that would confound diagnosis or evaluation of dystonia
• Significant medical or neurological conditions that affect completing study requirements
• Unwilling to permit video recording of examination and analysis of this video by a computer program
• Unable to provide a blood sample
• Under 18 years of age
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
you have any questions about the collection or use of this information, please visit our
Access to Information page.
Additional information
Contact information
Contact Research Assistant: Mehrafarin Ramezani (403) 220-6519 mehrafarin.ramezani@ucalgary.ca
Principal investigator:
Davide Martino
Clinical trial:
No
REB-ID:
REB20-0823