Johns Hopkins Motor Stereotypies Center
The Johns Hopkins Motor Stereotypies Center evaluates and treats children with primary motor stereotypies (those that occur in children who are otherwise developing normally). While there are no medications that effectively treat primary motor stereotypes, behavioral therapy (habit reversal) has been shown to be helpful. Led by Dr. Harvey Singer, our team also conducts clinical studies to better understanding the causes and to develop new treatments. Until then, our approach is to educate families about this disorder, which is unlikely to negatively impact a child’s daily home, school or social life.
If your child has stereotypic movements without other signs of a developmental disability, it’s possible they have a primary motor stereotypy disorder. Visit your pediatrician to rule out other causes. If your child has already been diagnosed with a movement disorder, our team can offer a second opinion.
Research and Clinical Studies
There has been little motor stereotypies research in normally developing (non-autistic) children. Our research team, led by Dr. Harvey Singer, is conducting several clinical studies that involve children and adults with primary motor stereotypies. The knowledge gained from this research will allow us to better understand the causes and underlying mechanism of the disorder, and to develop new treatments. We also hope to provide accurate and up-to-date information to patients, families and caregivers thanks to the research findings.
Our team is grateful to the Nesbitt-McMaster Foundation in Canada for the generous gift that is making this research possible.
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Study objective: The underlying cause of motor stereotypies is unknown; however, a positive family history is identified in 20% of patients. In this study, we use whole exome testing on DNA isolated from saliva to identify possible genetic abnormalities. This is a joint effort with Dr. Thomas Fernandez, a geneticist at Yale University.
Eligibility: Participants can be any age. We are also looking for families that have more than one person with primary complex motor stereotypies.
Participation Requirements:
- Introductory phone screening – Screening is completed by the study coordinator to confirm eligibility.
- Online forms – Several online questionnaires must be completed before saliva kits are provided.
- Saliva test – Samples are collected from both parents and the affected child. Sample collection involves spitting into a provided cup and mailing to Dr. Fernandez (postage is provided).
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Study objective: This study is designed to evaluate the presence of comorbidities (ADHD, OCD, anxiety, etc.) and the quality of life in adults with complex motor stereotypies.
Eligibility: Participants must be 21 or older and continue to exhibit primary complex motor stereotypies.
Participation Requirements:
- Introductory phone screening – The participant is screened by the study coordinator to determine whether he/she meets the study criteria.
- Online forms – Various questionnaires are provided to be completed online - may take up to 90 minutes to complete
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If your child has been diagnosed or exhibits symptoms of motor stereotypies, he or she might be eligible to participate in one of our clinical studies. Participants receive free comprehensive neuropsychological testing and a small stipend.
Studies are non-invasive and require a time commitment of a half day, one day or two days, depending on the study.
For more information, please email smahate1@jhmi.edu.
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Dr. Singer has co-authored numerous research papers on motor stereotypies and related topic.