Dr. Susan Fox at Toronto Western Hospital is conducting the Dystonia Coalition Projects on dystonia. The main study and the related Patient Centered Outcome (PCO) project are designed to work together to advance the understanding and treatment of dystonia. Patients with dystonia are first enrolled in the main study. Those with cervical dystonia or blepharospasm, who have received at least five Botox injections and are willing to return for multiple clinic visits, will be invited to participate in study 2 - PCO project.
What is the Dystonia Coalition?
The Dystonia Coalition is an international collaboration of medical researchers and patient advocacy groups with a mission to advance the pace of research in the dystonias to find better treatments and a cure.
Where can you learn more about joining this research?
Contact your doctor
Contact the coordinator
Coordinator: Carlos Ropa
Phone: 416-603-5800 Ext 3684
Email: carlos.ropa@uhn.ca
Please be advised that communication by e-mail is not absolutely secure. Therefore, please do not include on the e-mail any personal sensitive information.
Study 1: Main Dystonia Coalition Projects
Purpose of This Research: This research includes four related projects, each with different but overlapping goals:
- Learn about how dystonia may progress over time and what causes it.
- Develop tools to measure the severity of symptoms objectively.
- Create a collection of blood samples for analysis.
- Develop an app to monitor symptom severity.
Who Can Participate? Participants must be diagnosed with one of the following isolated dystonias:
- Focal dystonia (e.g., blepharospasm, oromandibular dystonia, laryngeal dystonia, cervical dystonia, limb dystonia)
- Segmental or multifocal dystonia
- Generalized dystonia
- Hemi-dystonia
- The last injection of botulinum toxin should be at least 2 months prior to the study visit (or symptoms should be noticeable).
What is Expected of the Participants? Participants in both the main study and the PCO project will be expected to:
- Answer questions about medical and family history and current state of mind.
- Have a neurological exam that will be video recorded.
- Donate a blood sample.
- Consider returning periodically for follow-ups.
Each study visit will take about 1 hour.
Study 2: Patient Centered Outcome (PCO) Project
Purpose of This Research: To find out how participants with dystonia respond to receiving the standard of care treatment (Botox) injections. Researchers have developed an app to help understand patient responses to botulinum toxin (Botox) injections.
Additional Participant Requirements for PCO Project:
You must be diagnosed with Blepharospasm (Eyes) or Cervical dystonia/Spasmodic torticollis (Neck)
Your last injection of botulinum toxin should be at least 2 months prior to study visit (or your symptoms should be noticeable).
Willing to come to the hospital for study visits
Ability to use a smartphone and app
Had at least 5-6 prior treatment cycles before entering the study
Participants will be given a token of appreciation for each follow-up visit.
Posters: