Opsoclonus-myoclonus syndrome

Last reviewed

🖨 Print for my doctorAdvocacy Hub →
ORPHA:1183G25.3
Who is this for?
Show terms as
33Specialists8Treatment centers

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
Report missing data

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
Abnormal saccadic eye movementsHP:0000570OpsoclonusHP:0010543NeuroblastomaHP:0003006Limb myoclonusHP:0045084Anti-Amphiphysin antibodyHP:5000002Breast carcinomaHP:0003002Ovarian teratomaHP:0012226Small cell lung carcinomaHP:0030357
Inheritance

Sporadic

Usually appears on its own, not inherited from a parent

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Jun 2026Use of the Methoxyflurane as Pain-killer in the Prehospital Management of Acute Myocardial Infarction

Assistance Publique - Hôpitaux de Paris — PHASE3

TrialNOT YET RECRUITING
May 2026Analgesic Effect of Parecoxib Versus Morphine in SCD Patients Presenting to the Emergency Department

Oman Medical Speciality Board — PHASE3

TrialNOT YET RECRUITING
May 2026Safety and Clinical Performance of the Freesolve Resorbable Magnesium Scaffold (RMS) System in Subjects With Coronary Artery Lesions

Teleflex — NA

TrialNOT YET RECRUITING
Apr 2026Efficacy and Safety of Intravenous Lidocaine Versus Placebo in Patients Receiving Morphine-rachi Analgesia

GCS Ramsay Santé pour l'Enseignement et la Recherche — PHASE3

TrialNOT YET RECRUITING
Apr 2026A 2x2 Factorial, Randomized, Open-label Trial to Evaluate Neuromodulators and Cough Control Therapy in Patients With Refractory or Unexplained Chronic Cough

McMaster University — PHASE4

TrialNOT YET RECRUITING
Mar 2026Study to Assess Effects of Ublituximab in Pediatric Participants With Relapsing Forms of Multiple Sclerosis

TG Therapeutics, Inc. — PHASE2, PHASE3

TrialNOT YET RECRUITING
Mar 2026Intrathecal MoRphine Versus Transabdominal Plane Block (TAP) Block for AnalGesic Management in Elective Caesarean Section

Istituto Giannina Gaslini — PHASE4

TrialNOT YET RECRUITING
Feb 2026Effect of Intraoperative Morphine on Postoperative Pain After CABG

Istanbul University - Cerrahpasa — PHASE4

TrialRECRUITING
Jan 2026A Non-randomised, Non-inferiority Comparative Study of Oral Actiskenan (Morphine Sulfate) Versus Intranasal Sufentanil in the Early Management of Severe Acute Pain in Emergency Departments.

Groupe Hospitalier de la Region de Mulhouse et Sud Alsace

TrialNOT YET RECRUITING
Jan 2026Sterile Water Injection vs Morphine for Renal Colic

University Tunis El Manar — NA

TrialACTIVE NOT RECRUITING

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 →

No actively recruiting trials found for Opsoclonus-myoclonus syndrome at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the Opsoclonus-myoclonus syndrome community →

Specialists

Showing 25 of 33View all specialists →
MM
Michael R Pranzatelli, MD
Specialist
PI on 1 active trial
GM
Gudrun Schleiermacher, MD
Specialist
PI on 2 active trials1 Opsoclonus-myoclonus syndrome publication
MM
Michael R Pranzatelli, M.D.
Specialist
PI on 1 active trial
YS
Yanping Sun
Specialist
1 Opsoclonus-myoclonus syndrome publication
WY
Wenjing Yan
Specialist
1 Opsoclonus-myoclonus syndrome publication
AH
Aalaya Haridas
Specialist
1 Opsoclonus-myoclonus syndrome publication
MP
Maitree Pandey
Specialist
1 Opsoclonus-myoclonus syndrome publication
YS
Yuqiang Song
Specialist
1 Opsoclonus-myoclonus syndrome publication
AG
Anshu Gupta
Specialist
1 Opsoclonus-myoclonus syndrome publication
RK
Raksha Kundal
Specialist
1 Opsoclonus-myoclonus syndrome publication
HZ
Haifang Zhu
Specialist
1 Opsoclonus-myoclonus syndrome publication
IF
I F Fedoseeva
Specialist
1 Opsoclonus-myoclonus syndrome publication
AG
A V Goncharenko
Specialist
1 Opsoclonus-myoclonus syndrome publication
TP
T V Poponnikova
Specialist
1 Opsoclonus-myoclonus syndrome publication
IG
I V Glebova
Specialist
1 Opsoclonus-myoclonus syndrome publication
OP
O S Pinevich
Specialist
1 Opsoclonus-myoclonus syndrome publication
VG
V A Goncharenko
Specialist
1 Opsoclonus-myoclonus syndrome publication
XZ
Xiaohan Zhang
Specialist
1 Opsoclonus-myoclonus syndrome publication
VM
Veronique Brulotte, MD
Specialist
PI on 4 active trials
JM
James C. Eisenach, M.D.
WINSTON SALEM, NC
Specialist
PI on 2 active trials
XM
XiaoFeng Shen, MD
Specialist
PI on 6 active trials
EM
Elizabeth D Tate, FNP, MN
Specialist
PI on 1 active trial
PA
Pedro A De Alarcon
ELK GROVE, CA
Specialist
PI on 1 active trial6 Opsoclonus-myoclonus syndrome publications

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Opsoclonus-myoclonus syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

Open Opsoclonus-myoclonus syndromeForum →

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.