Blepharospasm Tools

NCT ID: NCT02780336

Last Updated: 2019-05-31

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

405 participants

Study Classification

OBSERVATIONAL

Study Start Date

2016-08-31

Study Completion Date

2019-03-20

Brief Summary

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The aim of this study is to develop new rating scales to help diagnose and measure the severity of blepharospasm. This is a condition involving a lot of blinking and spasms of eye closure that people can't control. This study will also test some video software to see if it can help diagnose people or tell the severity of disease using only a video recording of an exam. There is an additional plan to create an educational video to teach others the proper use of the scale and video software.

Detailed Description

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Blepharospasm is a chronic disorder characterized by too many contractions in the muscles around the eye and nearby facial muscles, leading to involuntary eye closure. This study involves a comprehensive evaluation for patients with blepharospasm, other eye and face disorders, and people without any neurologic or eye or face disorders. It addresses abnormal movements of the muscles around the eye, pain in those muscles, psychological accompaniments, and impact on regular daily life. The evaluation for each participant will be done on a single visit, and it may take up to 1.5 hours to complete. Each participant in this study will be asked to do the following:

* Provide a copy of medical records and provide a medical history relating to the diagnosis of blepharospasm.
* Have an examination by a neurologist or ophthalmologist to reveal the features and extent of dystonia or other eye and face disorders. The examination will be video recorded so it can be reviewed later by different experts.
* Complete some questionnaires about quality of life and psychiatric well being

The doctors will also complete various scales and questionnaires based on the participant's study visit.

Conditions

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Blepharospasm Dystonia Other Eye and Face Disorders

Study Design

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Observational Model Type

CASE_CONTROL

Study Time Perspective

PROSPECTIVE

Study Groups

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Blepharospasm (BL)

Participants in this group should be diagnosed with blepharospasm, but may have dystonia in other body parts as well.

No intervention.

Intervention Type OTHER

Participants will complete questionnaires and interviews as well as have a neurological exam that will be video recorded. For this exam they will do simple movements (like looking at the camera, squeezing your eyes closed, moving your head, and writing).

Disease Control Group

Participants in this group should be diagnosed with a disorder affecting their eyes or face, such as hemifacial spasm, facial tics, or apraxia.

No intervention.

Intervention Type OTHER

Participants will complete questionnaires and interviews as well as have a neurological exam that will be video recorded. For this exam they will do simple movements (like looking at the camera, squeezing your eyes closed, moving your head, and writing).

Normal Control Group

Participants in this group should not have any neurologic problems or other disorders affecting patients eyes or face.

No intervention.

Intervention Type OTHER

Participants will complete questionnaires and interviews as well as have a neurological exam that will be video recorded. For this exam they will do simple movements (like looking at the camera, squeezing your eyes closed, moving your head, and writing).

Interventions

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No intervention.

Participants will complete questionnaires and interviews as well as have a neurological exam that will be video recorded. For this exam they will do simple movements (like looking at the camera, squeezing your eyes closed, moving your head, and writing).

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* Diagnosed with Focal, Multifocal or Segmental Isolated Dystonia with Onset in Adulthood, must include blepharospasm.
* Sufficiently symptomatic at recruitment to ensure that (eye) problems are evident to evaluators.
* Has ability to provide informed consent and follow study directions.


* Diagnosed with a facial or eye disorder that can be confused with blepharospasm, including, but not limited to, hemifacial spasm, facial tics, psychogenic facial disorders, apraxia, and ptosis due to weakness. It is permissible for these problems to be part of Bell's palsy, myasthenia gravis, or Progressive Supranuclear Palsy (PSP).
* Has no significant dystonia in any body part.
* Sufficiently symptomatic at recruitment to ensure that (eye) problems are evident to evaluators.
* Has ability to provide informed consent and follow study directions.


* Has no facial or eye problem and no other neurological complaints.

Exclusion Criteria

* Evidence of a secondary cause for dystonia as defined as blepharospasm caused by drug exposure, parkinsonism, or stroke.
* Suspected psychogenic movement or eye disorders.
* Has had surgical intervention for blepharospasm or eye problems that may confound interpretations, such as orbital myectomy, blepharoplasty, or deep brain stimulation surgery.
* Is being treated with dopamine receptor antagonists.
* Received BTX injection/botulinum toxin less than 10 weeks prior to study visit.
* Taking any concomitant medications that haven't been at stable doses for at least 1 month prior to study enrollment.
* Has significant medical or neurological conditions that preclude completing the video protocol and questionnaires.
* Has significant physical or other condition that would confound diagnosis or evaluation.

DISEASE CONTROL GROUP:


* Significant dystonia.
* Evidence of secondary blepharospasm as defined as blepharospasm caused by drug exposure or stroke.
* Received BTX injection/botulinum toxin less than 10 weeks prior to study visit.
* Taking any concomitant medications that haven't been at stable doses for at least 1 month prior to study enrollment.
* Unable to provide informed consent and follow study directions.
* Has significant medical or neurological conditions that preclude completing the video protocol and questionnaires.
* Has significant physical or other condition that would confound diagnosis or evaluation.

NORMAL CONTROL GROUP:


* Has facial or eye problem or other neurological complaints.
* Taking any concomitant medications that haven't been at stable doses for at least 1 month prior to study enrollment.
* Unable to provide informed consent and follow study directions.
* Has significant medical or neurological conditions that preclude completing the video protocol and questionnaires.
* Has significant physical or other condition that would confound diagnosis or evaluation.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Benign Essential Blepharospasm Research Foundation

OTHER

Sponsor Role collaborator

Emory University

OTHER

Sponsor Role lead

Responsible Party

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Hyder A. Jinnah, MD, PhD

Principal Investigator

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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H. A. Jinnah, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Emory University

Locations

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University of Colorado Denver

Aurora, Colorado, United States

Site Status

Emory University

Atlanta, Georgia, United States

Site Status

Rush University

Chicago, Illinois, United States

Site Status

Johns Hopkins University

Baltimore, Maryland, United States

Site Status

National Institutes of Health

Bethesda, Maryland, United States

Site Status

Washington University in St. Louis

St Louis, Missouri, United States

Site Status

Baylor College of Medicine

Houston, Texas, United States

Site Status

Toronto Western Hospital

Toronto, Ontario, Canada

Site Status

University Hospital of Schleswig-Holstein

Lübeck, , Germany

Site Status

University of Bari

Bari, , Italy

Site Status

University of Rome

Rome, , Italy

Site Status

Countries

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United States Canada Germany Italy

Related Links

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Other Identifiers

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U54TR001456

Identifier Type: NIH

Identifier Source: secondary_id

View Link

IRB00087047

Identifier Type: -

Identifier Source: org_study_id

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