European Non-interventional Study on Refractory Epilepsy With Developmental Delay

NCT ID: NCT04398667

Last Updated: 2023-12-01

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

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Recruitment Status

TERMINATED

Total Enrollment

93 participants

Study Classification

OBSERVATIONAL

Study Start Date

2019-03-14

Study Completion Date

2020-09-04

Brief Summary

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This is a multinational, multicentre, non-interventional, retrospective data collection (manual Medical Chart Review).

Detailed Description

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This is a multinational, multicentre, non-interventional, retrospective data collection (manual Medical Chart Review). The identified local site staff (or trained independent data abstractors, if requested by the site) will review the medical records of all participants meeting the eligibility criteria, who have provided a signed inform consent form (ICF) for data collection and analysis. For participants who are less than 18 years of age, in addition to the assent form being signed by the participant, an informed consent would be obtained from parental or legally authorized representative.

In line with the retrospective nature of the study: there is no assignment of a participant to a particular therapeutic strategy; no additional diagnostic or monitoring procedures shall be applied to the participants; epidemiological methods shall be used for the analysis of collected data; the prescription of any medication for the treatment of the epileptic syndrome occur before the collection of the data in this study and is clearly separated from the decision to include the participant in the study.

Conditions

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Refractory Epilepsy Development Delay

Keywords

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Observational Retrospective

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

RETROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* Age ≥2 years
* Disease history of at least 24 months from date of first seizure
* Medical history of epilepsy associated with moderate to severe intellectual disability, cognitive developmental delay or cognitive regression
* Medical history of onset of seizures in early childhood (≤ 8 years)
* Failure of adequate trials of two tolerated and appropriately chosen and used Anti-Epileptic Drug (AED) schedules (whether as monotherapies or in combination) to achieve sustained seizure freedom
* Ongoing refractory epilepsy
* MRI and EEG data are available for the participant
* Participants (or their parents/ legal representative as appropriate) have provided written informed consent / assent form to collect the data specified.

Exclusion Criteria

* Normal cognitive development.
* Any acute symptomatic seizures in participants with underlying developmental delay.
* Any progressive intellectual and neurological deterioration conditions.
Minimum Eligible Age

2 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Zogenix International Limited, Inc., a subsidiary of Zogenix, Inc.

INDUSTRY

Sponsor Role collaborator

Zogenix, Inc.

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Unité de neuropédiatrie, CHU Angers

Angers, , France

Site Status

Department of Neurology - Foundation John Bost

La Force, , France

Site Status

Hospital St Louis DRCI, CHU Bicêtre

Paris, , France

Site Status

Charité - Universitätsmedizin Berlin

Berlin, , Germany

Site Status

Institut der Diagnostik der Epilepsien

Berlin, , Germany

Site Status

Zentrum für Sozialpädiatrie und Neuropädiatrie (DBZ), Vivantes Klinikum

Berlin, , Germany

Site Status

Gesellschaft für Epilepsieforschung e. V.

Bielefeld, , Germany

Site Status

Klinik für Epileptologie, Universitätsklinikum Bonn

Bonn, , Germany

Site Status

Klinik für Neurologie, Heilig Geist-Krankenhaus GmbH

Cologne, , Germany

Site Status

Klinik Für Kinder- und Jugendmedizin, Neuropadiatrie und Epilepsiezentrum

Frankfurt, , Germany

Site Status

Department of Neurology / Epileptology, University Medicine Greifswald

Greifswald, , Germany

Site Status

Klinik für Kinder-und Jugendmedizin II, Universitätsklinikum Schleswig-Holstein

Kiel, , Germany

Site Status

Epilepsiezentrum Kork

Kork, , Germany

Site Status

Department of Neurologie University of Magdeburg

Magdeburg, , Germany

Site Status

Abteilung für Epileptologie, ZfP Südwürttemberg

Ravensburg, , Germany

Site Status

I.R.C.C.S. Giannina Gaslini

Genova, , Italy

Site Status

Oasi Research Institute

Troina, , Italy

Site Status

Hospital Vall d'Hebron

Barcelona, , Spain

Site Status

Hospital Ruber Internacional

Madrid, , Spain

Site Status

Countries

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United Kingdom France Germany Italy Spain

Other Identifiers

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915-ENSURED

Identifier Type: -

Identifier Source: org_study_id