The aim of EPISTOP project is to better understand the mechanisms of epilepsy in patients with tuberous sclerosis complex (TSC). The title of the project: ‘Long-term, prospective study evaluating clinical and molecular biomarkers of epileptogenesis in a genetic model of epilepsy – tuberous sclerosis complex.’ This is a multicenter study, involving 14 hospitals and laboratories from Europe and United States. The project is planned for 5 years, from November 2013 until October 2018, and during that time we plan to identify the risk factors and biomarkers of epileptogenesis including the development of clinical seizures and progression after the condition is established. The important goal of the project is also to identify means and targets enabling epilepsy prevention and disease development modifications. In a long term we would like to prepare new directions and guidelines  regarding the treatment of patients with TSC and epilepsy that could result in improvement of patients’ life in the future.

Patients can contribute to the project by:

• participating in observational part of the study that includes video electroencephalography (videoEEG), brain magnetic resonance imaging (MRI) and blood samples analysis (genetic, protein, immunological and other studies)
• participating in randomized part of the study that aims to examine the clinical benefit of early diagnosis of epilepsy and intervention in the form of antiepileptic drug treatment in TSC children that demonstrate electroencephalographic seizures
• providing consent for the studies on  brain tissue samples, if relevant

If you are interested in participation in EPISTOP project, please contact:

INSTYTUT "POMNIK-CENTRUM ZDROWIA DZIECKA"
Al. Dzieci Polskich 20
04-730 Warszawa
Poland
Prof. Sergiusz Jóźwiak
T: +48 22 815 74 04
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UNIVERSITA DEGLI STUDI DI ROMA TOR VERGATA
Via Orazio Raimondo
18 00173 Rome
Italy
Prof. Paolo Curatolo
T:  +39 0 62 0 90 02 49
E: curatolo@uniroma2@it

INSTITUT NATIONAL DE LA SANTE ET DE LA RECHERCHE MEDICALE
2 Rue d'Alesia cs 51419
75014 Paris
France
Prof. Rima Nabbout
T: +33 14 438 15 36
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VRIJE UNIVERSITEIT BRUSSEL
Pleinlaan 2
1050 Brussel
Belgium
Prof. Anna Jansen
T: +32 2 477 57 85
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FAKULTNI NEMOCNICE V MOTOLE
V Úvalu 84
15006 Praha 5
Czech Republic
Dr. Pavel Kršek
T: +42 022 443 33 51 (3300)
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CHARITE – UNIVERSITAETSMEDIZIN BERLIN
Charitéplatz 1
D-10117 Berlin
Germany
Dr. Bernhard Weschke
T: +49 30 450 666 617
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UNIVERSITAIR MEDISCH CENTRUM UTRECHT
Heidelberglaan 100
3584 CX UTRECHT
Postbus 85500,
3508 GA UTRECHT
Netherlands
Dr. Floor Jansen
T: + 31-88 755 4341
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KATHOLIEKE UNIVERSITEIT LEUVEN
Waaistraat 6
box 5105
3000 Leuven
Belgium
Prof. Lieven Lagae
T: 32 16 34 38 45
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MEDIZINISCHE UNIVERSITAET WIEN
Spitalgasse 23
1090 Wien
Austria
Prof. Martha Feucht
T: 43 14 0 400 38 05
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ACADEMISCH MEDISCH CENTRUM BIJ DE UNIVERSITEIT VAN AMSTERDAM
Meibergdreef 9
1105 AZ Amsterdam
Netherlands
Prof. Eleonora Aronica
T: 31 20 566 95 22
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INTERNATIONAL INSTITUTE OF MOLECULAR AND CELL BIOLOGY
ul. Ks. Trojdena 4,
02-109 Warszawa
Poland
Prof. Jacek Jaworski
T: +48 22 5970 755
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THE BRIGHAM AND WOMEN’S HOSPITAL, Inc.
Francis Street 75
02 115 Boston
USA
Dr. David Kwiatkowski
T: +1 617 355 9005
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PROTEOME FACTORY AG
Magnusstrasse 11
D-12489 Berlin
Germany
Prof. Christian Scheler
T: +49 3020616265
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ServiceXS BV
Plesmanlaan 1 d
2333 BZ Leiden
Netherlands
Prof. Bart Janssen
T: +31 715681018
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A.R.S. Consulting s.r.l.
Via S. Grandis, 1 – 00185 Roma
Italy
Alberto Sciuto
T: +39 067014680; mobile +39 3478569164;
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Lady Cilento Children’s Hospital
Neurosciences Unit, Level 6C
501 Stanley Street
Brisbane, QLD 4101
Australia
Dr Kate Riney
T: + 61 7 3068 2880
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