Opsoclonus Myoclonus Syndrome/Dancing Eye Syndrome (OMS/DES) in Children With and Without Neuroblastoma (NBpos and NBneg)Opsoclonus Myoclonus Syndrome/Dancing Eye Syndrome (OMS/DES) in Children With and Without Neuroblastoma (NBpos and NBneg)

NCT ID: NCT01868269

Last Updated: 2025-02-03

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

Get a concise snapshot of the trial, including recruitment status, study phase, enrollment targets, and key timeline milestones.

Recruitment Status

COMPLETED

Clinical Phase

PHASE3

Total Enrollment

102 participants

Study Classification

INTERVENTIONAL

Study Start Date

2013-04-18

Study Completion Date

2025-01-17

Brief Summary

Review the sponsor-provided synopsis that highlights what the study is about and why it is being conducted.

The OMS/DES study is a multinational European Trial for Children with the Opsoclonus Myoclonus Syndrome / Dancing Eye Syndrome.

This trial brought on the way by specialists of the EPNS (European Paediatric Neurology Society), the GPOH (Gesellschaft für Pädiatrische Hematologic und Oncologie) and the SIOPEN (SIOP (International Society Oncology Pediatric) Europe Neuroblastoma).

This protocol will investigate an escalating treatment schedule starting with a corticosteroid standard treatment with dexamethasone pulses (first step), which is followed, if response has been inadequate after 3 months of treatment, by the addition of CP (second step) and, if still no sufficient improvement, by the replacement of CP by Rituximab (third step). Treatment intensification is decided on the basis of standardized scoring of OMS/DES severity.

Detailed Description

Dive into the extended narrative that explains the scientific background, objectives, and procedures in greater depth.

Conditions

See the medical conditions and disease areas that this research is targeting or investigating.

Opsoclonus Myoclonus Syndrome Neuroblastoma

Study Design

Understand how the trial is structured, including allocation methods, masking strategies, primary purpose, and other design elements.

Allocation Method

NA

Intervention Model

SINGLE_GROUP

Primary Study Purpose

TREATMENT

Blinding Strategy

NONE

Study Groups

Review each arm or cohort in the study, along with the interventions and objectives associated with them.

Dexamethasone Cyclophosphamide Rituximab

Group Type OTHER

Dexamethasone acetate

Intervention Type DRUG

First step:

immunosuppressive treatment with dexamethasone

dexamethasone and cyclophosphamide

Intervention Type DRUG

second step (in case of insufficient response): immunosuppressive treatment with dexamethasone and cyclophosphamide

dexamethasone and rituximab

Intervention Type DRUG

third step (in case of insufficient response): immunosuppressive treatment with dexamethasone and rituximab

Interventions

Learn about the drugs, procedures, or behavioral strategies being tested and how they are applied within this trial.

Dexamethasone acetate

First step:

immunosuppressive treatment with dexamethasone

Intervention Type DRUG

dexamethasone and cyclophosphamide

second step (in case of insufficient response): immunosuppressive treatment with dexamethasone and cyclophosphamide

Intervention Type DRUG

dexamethasone and rituximab

third step (in case of insufficient response): immunosuppressive treatment with dexamethasone and rituximab

Intervention Type DRUG

Eligibility Criteria

Check the participation requirements, including inclusion and exclusion rules, age limits, and whether healthy volunteers are accepted.

Inclusion Criteria

* Children with newly diagnosed OMS/DES either NB-pos or NB-neg.

Three out of the following four components are necessary for the diagnosis of OMS/DES:

* Opsoclonus or ocular flutter (but not nystagmus)
* Ataxia and/or myoclonus
* Behavioural change and/or sleep disturbance
* Neuroblastoma The diagnosis of OMS/DES may be difficult in some patients. Opsoclonus, in particular, may be intermittent or late in onset. A video example will be available at www.dancingeyes.org.uk. If uncertain, please contact the national coordinator for support in interpreting clinical features.

* Age 6 months or over up to less than 8 years (\< 8th birthday) The date of diagnosis of OMS/DES is the date on which a doctor confirms the condition to be OMS/DES. The date of symptom onset needs also to be documented.
* Treatment start with the standard corticosteroid treatment with dexamethasone pulses as proposed by the guidelines given in this trial protocol (see 11.10, page 71).
* In patients with presumed NB-neg OMS/DES, neuroblastoma must be excluded according the guidelines of this trial (see chapter 4.4.1.4, page 30, and appendix 11.9, page 70)
* Documented informed consent for treatment and enrolment in the trial by parents / legal representatives.

Exclusion Criteria

•Patients with opsoclonus, myoclonus or ataxia caused by other identified disease (e.g. current active CNS infection, neurometabolic disorder or demyelination).

An identified viral precursor is not an exclusion criterion.

* prior or parallel use of chemotherapy (other than required for treatment of the neuroblastoma)
* Corticoid steroid for OMS/DES or other reasons lasting 14 days or more immediately before treatment start according the standard treatment proposed (treatment with corticosteroids for less than 14 days will be allowed)
* contre-indication of use of one of the experimental study drug (cf Summary of Product Characteristics used in this study)
Minimum Eligible Age

6 Months

Maximum Eligible Age

8 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

Meet the organizations funding or collaborating on the study and learn about their roles.

Institut Curie

OTHER

Sponsor Role lead

Responsible Party

Identify the individual or organization who holds primary responsibility for the study information submitted to regulators.

Responsibility Role SPONSOR

Principal Investigators

Learn about the lead researchers overseeing the trial and their institutional affiliations.

Gudrun Schleiermacher, MD

Role: PRINCIPAL_INVESTIGATOR

Institut Curie

Locations

Explore where the study is taking place and check the recruitment status at each participating site.

St. Anna Kinderkrebsforschung e.V. CHILDREN'S CANCER RESEARCH INSTITUTE

Vienna, , Austria

Site Status

Chu de Bicetre

Le Kremlin-Bicêtre, LE Kremlin Bicetre, France

Site Status

Centre Oscar Lambret

Lille, Lille Cedex, France

Site Status

Centre Leon Berard

Lyon, LYON Cedex 08, France

Site Status

Hopita D'Enfants de La Timone

Marseille, Marseille Cedex 5, France

Site Status

Hopital Arnaud de Villeneuve

Montpellier, Montpellier Cedex 4, France

Site Status

Chr de Nantes

Nantes, Nantes Cedex01, France

Site Status

Chu de Nice Archet 2

Nice, NICE Cedex 03, France

Site Status

Ch Trousseau

Paris, Paris Cedex 12, France

Site Status

Chu Hopital Sud

Rennes, Rennes Cedex 02, France

Site Status

Chu de Rouen

Rouen, Rouen Cedex, France

Site Status

CHU DE STRASBOURG HOPITAL Hautepierre

Strasbourg, Strasbourg Cedex, France

Site Status

Chu Toulouse Hopital Des Enfants

Toulouse, Toulouse Cedex 9, France

Site Status

Chu Amiens

Amiens, , France

Site Status

Chu Angers

Angers, , France

Site Status

Hopital Jean Minjoz

Besançon, , France

Site Status

Chr Pellegrin

Bordeaux, , France

Site Status

CHU CAEN

Caen, , France

Site Status

Chu D'Estaing

Clermont-Ferrand, , France

Site Status

Chu Dijon

Dijon, , France

Site Status

Chu de Grenoble

Grenoble, , France

Site Status

Chu de Limoges

Limoges, , France

Site Status

Institut Curie

Paris, , France

Site Status

Chu de Poitiers

Poitiers, , France

Site Status

Chu de Reims

Reims, , France

Site Status

CHU LA REUNION Site Félix Guyon

Saint-Denis, , France

Site Status

Chu Saint Etienne

Saint-Etienne, , France

Site Status

Chu Tours Hopital Clocheville

Tours, , France

Site Status

Hopital Nancy Brabois

Vandœuvre-lès-Nancy, , France

Site Status

Institut de Cancerologie Gustave Roussy

Villejuif, , France

Site Status

G. Gaslini Institut

Genova, , Italy

Site Status

The Fundación para la Formación e Investigación Sanitarias de la Región de Murcia

El Palmar, , Spain

Site Status

University Hospital Lund

Lund, , Sweden

Site Status

Universitätskinderklinik

Bern, , Switzerland

Site Status

Kinderspital Zurich

Zurich, , Switzerland

Site Status

John Radcliffe Hospital

Oxford, , United Kingdom

Site Status

Countries

Review the countries where the study has at least one active or historical site.

Austria France Italy Spain Sweden Switzerland United Kingdom

Other Identifiers

Review additional registry numbers or institutional identifiers associated with this trial.

IC 2011-02

Identifier Type: -

Identifier Source: org_study_id

More Related Trials

Additional clinical trials that may be relevant based on similarity analysis.

Recurrent Crying Spells in Cerebral Palsy
NCT01955655 COMPLETED PHASE4