Overview
Opsoclonus-myoclonus syndrome (OMS), also known as opsoclonus-myoclonus-ataxia syndrome, dancing eyes-dancing feet syndrome, or Kinsbourne syndrome, is a rare neurological condition in which the immune system mistakenly attacks the brain, particularly the cerebellum. This leads to a combination of distinctive symptoms: rapid, chaotic eye movements (opsoclonus or "dancing eyes"), sudden involuntary muscle jerks (myoclonus), difficulty with balance and coordination (ataxia), and often behavioral changes or sleep disturbances. In children, OMS is frequently associated with a type of tumor called neuroblastoma — about half of pediatric cases are linked to this cancer. In these cases, the immune system reacts to the tumor but also attacks healthy brain tissue by mistake, a process called a paraneoplastic response. In adults, OMS can occur after viral infections or in association with other cancers such as breast, lung, or ovarian cancer. Sometimes no underlying cause is found, which is called idiopathic OMS. Treatment focuses on calming the overactive immune system using medications like corticosteroids, ACTH (adrenocorticotropic hormone), intravenous immunoglobulin (IVIG), and sometimes rituximab or other immunosuppressants. If a tumor is present, it must also be treated. While many patients improve with treatment, relapses are common, and long-term cognitive and behavioral problems — especially in children — can persist even after the movement symptoms improve. Early and aggressive treatment is believed to lead to better outcomes.
Also known as:
Key symptoms:
Rapid, chaotic, involuntary eye movements (dancing eyes)Sudden muscle jerks throughout the bodyDifficulty with balance and coordination (unsteady walking)Irritability and mood changesSleep disturbancesTremorDifficulty speaking clearlyBehavioral changes such as rage attacks or emotional outburstsCognitive difficulties including problems with attention and learningDroolingDifficulty sitting or standing without supportFatigueRegression of previously learned skills in children
Clinical phenotype terms (22)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
10 eventsAssistance Publique - Hôpitaux de Paris — PHASE3
Oman Medical Speciality Board — PHASE3
Teleflex — NA
GCS Ramsay Santé pour l'Enseignement et la Recherche — PHASE3
McMaster University — PHASE4
TG Therapeutics, Inc. — PHASE2, PHASE3
Istituto Giannina Gaslini — PHASE4
Istanbul University - Cerrahpasa — PHASE4
Groupe Hospitalier de la Region de Mulhouse et Sud Alsace
University Tunis El Manar — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Opsoclonus-myoclonus syndrome.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Opsoclonus-myoclonus syndrome at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Opsoclonus-myoclonus syndrome.
Community
No community posts yet. Be the first to share your experience with Opsoclonus-myoclonus syndrome.
Start the conversation →Latest news about Opsoclonus-myoclonus syndrome
Disease timeline:
New recruiting trial: Measure of the Potential Evoked by Electric Stimulation
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: The Effects of Propranolol, Hydrocortisone, and Morphine on Military-Relevant Performance Outcomes
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: Intrathecal Morphine for Postoperative Analgesia in Major Laparoscopic Abdominal Surgery, a IMPACT-Scope Trial
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: Dinalbuphine Ester (Naldebain) for Pain Management After Cesarean Section
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: FaR-RMS: An Overarching Study for Children and Adults With Frontline and Relapsed RhabdoMyoSarcoma
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: Safety and Clinical Performance of the Freesolve Resorbable Magnesium Scaffold System in the Treatment of Subjects With Long de Novo Lesions
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: Pain Control and Quality of Recovery After Intravenous Methadone Versus Intrathecal Morphine in Major Abdominal Surgery
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: Resorbable Magnesium Scaffolds Registry
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: Effectiveness of MST Versus ECT for Major Depressive Episode
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
New recruiting trial: A Study to Evaluate the Pharmacokinetics, Pharmacodynamics, Safety, Radiological and Clinical Effects of Subcutaneous Ublituximab in Participants With Relapsing Multiple Sclerosis (RMS)
A new clinical trial is recruiting patients for Opsoclonus-myoclonus syndrome
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What is the likely cause of OMS in my case (or my child's case) — is there an underlying tumor?,What combination of immunotherapy do you recommend, and how long will treatment last?,How will you monitor for relapses, and what should I watch for at home?,What are the expected long-term effects on learning, behavior, and development?,When should neuropsychological testing be done, and how often should it be repeated?,What are the side effects of the medications, and how will they be managed?,Are there clinical trials or newer treatments that might be appropriate?
Common questions about Opsoclonus-myoclonus syndrome
What is Opsoclonus-myoclonus syndrome?
Opsoclonus-myoclonus syndrome (OMS), also known as opsoclonus-myoclonus-ataxia syndrome, dancing eyes-dancing feet syndrome, or Kinsbourne syndrome, is a rare neurological condition in which the immune system mistakenly attacks the brain, particularly the cerebellum. This leads to a combination of distinctive symptoms: rapid, chaotic eye movements (opsoclonus or "dancing eyes"), sudden involuntary muscle jerks (myoclonus), difficulty with balance and coordination (ataxia), and often behavioral changes or sleep disturbances. In children, OMS is frequently associated with a type of tumor called
How is Opsoclonus-myoclonus syndrome inherited?
Opsoclonus-myoclonus syndrome follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Which specialists treat Opsoclonus-myoclonus syndrome?
25 specialists and care centers treating Opsoclonus-myoclonus syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.