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Diagnostic and Rating Tools for Bleparospasm

Status: RECRUITING

Background

Dystonia is characterized by excessive pulling of muscles leading to twisting movements or abnormal postures. In patients with blepharospasm, the muscles of the eye and face are affected. The excessive pulling causes the eyes to blink or close involuntarily. Often, the blinking and closure movements are accompanied by soreness or pain in the muscles. Not surprisingly, these problems cause a lot of personal distress. They can be associated with embarrassment, negative consequence on mood, and reduced quality of life. Some patients benefit from injections of muscle relaxers to quiet the muscles pulling in the eye and face, but the benefits are temporary and improved treatments are needed. This study is being done to develop the best ways to measure all aspects of blepharospasm, so that we can properly test the value of any newly proposed treatments. Each participant will have a comprehensive assessment of their dystonia, along with any potentially related problems.

This study is being done to answer the following questions:

  • What are the best criteria to consider to make a diagnosis of blepharospasm?
  • What is the best way to measure the severity of the movement disorder in blepharospasm?
  • Are there significant psychological accompaniments in blepharospasm?
  • How do these different problems impact regular daily life in blepharospasm?
  • Do we have some computer software that could help physicians make a diagnosis of blepharospasm?

About this Study

This is 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. We hope to recruit 200 participants with blepharospasm, about 150 with other eye and face disorders, and 50 with no neurologic, eye or face disorder.  These participants will be enrolled at 11 different centers over 1-2 years. 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 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

This study is being conducted with the aid and support of the Office of Rare Diseases/National Center for Advancing Translational Sciences (ORDR/NCATS) and the National Institute for Neurological Diseases and Stroke (NINDS) at the National Institutes of Health (NIH) and the Benign Essential Blepharospasm Research Foundation (BEBRF).

Targeted Enrollment

To be eligible to participate, you must be 18 years or older and fit into one of three categories:

  1. Have dystonia that includes your eyes
  2. Have an eye or facial disorder, but no dystonia
  3. Have no neurological disorder or eye or facial disorder

You are not eligible to participate if:

  • You have secondary blepharospasm
  • You are less than 18 years old

How to participate:

In order to participate in a study, you must personally contact the study coordinator of any of the participating institutions by phone or by e-mail. Please use the information below to inquire about participation.

View the list of Participating Clinical Centers >

Coordinating Centers

  • Washington University School of Medicine, St. Louis, MO
    Contact: L. Jo Wright, Clinical Research Coordinator
    Phone: 314-362-7148
    E-mail: wrightl@npg.wustl.edu

  • Emory University, Atlanta, GA
    Contact: Gamze Kilic Berkmen, PhD
    Phone: 404-727-3381
    E-mail: gamze.kilic.berkmen@emory.edu


Please Note: The Rare Diseases Clinical Research Network will make every effort to enroll all the patients we can, but we cannot make any guarantees that we will be able to enroll everyone in a particular study who wants to participate.