Mainz Epilepsy Registry
MAINZ-EPIREG
Study on Disease Course and Quality of Life in Patients With Epilepsy (Mainz Epilepsy Registry)
MAINZ-EPIREG
Study on Disease Course and Quality of Life in Patients With Epilepsy (Mainz Epilepsy Registry)
Sponsor study identifier
observational
700
1 country
1
Study Start
February 1, 2018
Actual (reported)Primary Completion
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Prospective longitudinal observational registry study of all patients with epilepsy treated in the Mainz Comprehensive Epilepsy and Sleep Medicine Center with the focus on the course of the disease and quality of life.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
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Some registry-reported names shown below are not yet linked in this graph.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
February 1, 2018
Actual (reported)February 11, 2022
Actual (reported)March 4, 2022
Actual (reported)January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
monthly seizure frequency after 6 months
monthly seizure frequency at the follow-up after 6 months
6 months
European Quality of Life 5 dimensions Index (EQ 5D Index)
health-related quality of life measured by EQ5D-Index (European Quality of Life 5 dimensions), rating from 0 (worst possible state) to 1 (best possible state)
6 months
monthly seizure frequency after 12 months
monthly seizure frequency at the follow-up after 12 months
12 months
European Quality of Life 5 dimensions Index (EQ 5D Index)
health-related quality of life measured by EQ5D-Index (European Quality of Life 5 dimensions), rating from 0 (worst possible state) to 1 (best possible state)
12 months
Seizure freedom
percentage of patients without epileptic seizures
6 months
Resilience Scale 13
12 months
Resilience Scale 13
24 months
Multidimensional Fatigue Inventory
12 months
Multidimensional Fatigue Inventory
24 months
Beck Depression Inventory II
12 months
no interventions, only observation
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
All patients treated in Mainz Comprehensive Epilepsy and Sleep Medicine Center
Mainz Comprehensive Epilepsy and Sleep Medicine Center
Mainz, Rhineland-Palatinate, 55131, Germany
Winter Y, Abou Dargham R, Patino Tobon S, Groppa S, Fuest S. Cenobamate as an Early Adjunctive Treatment in Drug-Resistant Focal-Onset Seizures: An Observational Cohort Study. CNS Drugs. 2024 Sep;38(9):733-742. doi: 10.1007/s40263-024-01109-9. Epub 2024 Aug 3.
Winter Y, Sandner K, Vieth T, Gonzalez-Escamilla G, Stuckrad-Barre SV, Groppa S. Third-Generation Antiseizure Medication in the Treatment of Benzodiazepine-Refractory Status Epilepticus in Poststroke Epilepsy: A Retrospective Observational Register-Based Study. CNS Drugs. 2023 Oct;37(10):929-936. doi: 10.1007/s40263-023-01039-y. Epub 2023 Oct 2.
Yaroslav Winter, MD, MSc
Mainz Comprehensive Epilepsy and Sleep Medicine Center
First Submitted
February 11, 2022
First Posted
March 4, 2022
Study Start
February 1, 2018
Actual (reported)Primary Completion
January 31, 2024
Estimated (date passed)Web-Based Epilepsy Education Program for Adolescents and Parents
Seizure freedom
percentage of patients without epileptic seizures
12 months
interruption of status epilepticus
percentage of patients with interrupted status epilepticus
48 hours
Contact the study team to confirm eligibility.
This estimate has passed. The registry has not confirmed an actual date for this milestone.
Study Completion
January 31, 2024
Estimated (date passed)This estimate has passed. The registry has not confirmed an actual date for this milestone.
Last Updated
March 4, 2022
Record last verified: 2022-02
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Source: ClinicalTrials.gov.
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