The Becoming of Children With Doose Syndrome (DOOSE)

Doose syndrome is a rare epileptic syndrome that can lead to learning difficulties and a poor quality of life. The goal of this study is to evaluate the evolution of epilepsy and its consequences on cognitive development and learning issues in children with Doose syndrome.

Study Overview

• Status: Completed
• Conditions: Epileptic Syndromes; Learning Disabilities; Doose Syndrome
• Intervention / Treatment: Other: questionnaire

Detailed Description

Doose syndrome is a rare epileptic syndrome beginning between ages two and five, characterized by myoclonic-astatic seizures which can be associated with myoclonic seizures, astatic seizures, absences and generalized tonic-clonic seizures. These seizures can be difficult to treat effectively and may lead to learning difficulties. During this study, parents of children with Doose syndrome will receive a questionnaire regarding learning disabilities, quality of life and epilepsy of their children.

• Study Type: Observational
• Enrollment (Actual): 9

Contacts and Locations

Study Locations

• France
  • Amiens, France, 80480
    • CHU Amiens

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 1 year to 6 years (Child)
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

During this study, parents of children with Doose syndrome will receive a questionnaire regarding learning disabilities, quality of life and epilepsy of their children. Children with doose syndrome diagnosed between ages 1 and 6 and with normal development until onset of seizures will be included in this study.

Description

Inclusion Criteria:

• children with doose syndrome diagnosed between ages 1 and 6
• normal development until onset of seizures

Exclusion Criteria:

• unconfirmed diagnoses
• abnormal diagnoses
• abnormal psychomotor development before onset of seizures
• cerebral MRI abnormalities
• other child epileptic syndromes

Study Plan

How is the study designed?

Design Details

• Observational Models: Cohort
• Time Perspectives: Prospective

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
disease effects on the learning ability of children with doose syndrome	disease effects on the learning ability of children with doose syndrome base on scholar informations	day of inclusion

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Evolution of epilepsy in children with doose syndrome based on pathological symptoms	Evolution of epilepsy in children with doose syndrome based on pathological symptoms	day of inclusion

Collaborators and Investigators

• Sponsor: Centre Hospitalier Universitaire, Amiens
• Collaborators: University Hospital, Rouen; University Hospital, Lille
• Investigators: Principal Investigator: Sylvie Nguyen, Pr, CHRU Lille; Principal Investigator: Axel Lebas, MD, CHU Rouen

Study record dates

Study Major Dates

• Study Start (Actual): June 1, 2019
• Primary Completion (Actual): June 27, 2023
• Study Completion (Actual): June 27, 2023

Study Registration Dates

• First Submitted: August 6, 2019
• First Submitted That Met QC Criteria: August 6, 2019
• First Posted (Actual): August 7, 2019

Study Record Updates

• Last Update Posted (Actual): June 12, 2026
• Last Update Submitted That Met QC Criteria: June 11, 2026
• Last Verified: June 1, 2026

More Information

Terms related to this study

• Keywords: doose syndrome; Epileptic Syndromes; Learning Disabilities
• Additional Relevant MeSH Terms: Neurologic Manifestations; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Mental Disorders; Neurobehavioral Manifestations; Neurodevelopmental Disorders; Epilepsy, Generalized; Epilepsy; Communication Disorders; Pathological Conditions, Signs and Symptoms; Signs and Symptoms; Epileptic Syndromes; Learning Disabilities; Epilepsies, Myoclonic; Health Care Quality, Access, and Evaluation; Investigative Techniques; Epidemiologic Methods; Data Collection; Health Care Evaluation Mechanisms; Quality of Health Care; Public Health; Environment and Public Health; Surveys and Questionnaires
• Other Study ID Numbers: PI2018_843_0058

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No