DESCRIBE-FTD

DZNE Clinical Registry Study on Frontotemporal Dementia (FTD)

Background an aims

Frontotemporal dementias (FTDs) can affect patients' speech and behavior, as well as impair their memories.

The aims of the DESCRIBE-FTD study are to describe the course of FTDs in detail, in their various characteristic clinical forms, to improve our understanding of the underlying pathology and to identify effective parameters for diagnosis and forecasting of the diseases' progression. This work is expected to illuminate the causes of the diseases, and to provide a basis for better therapies that can be applied at earlier stages of the diseases.

Course of the study

Records will be kept of the results of examinations performed during study participants' normal care. Such records will cover study participants' medical history, medications taken, clinical and neurological examinations and tests of cognitive/memory functions, language abilities and motor skills. If any scans/measurements such as a 3T MRI scan (3T MRI), an electroencephalogram (EEG; measurement of the patients' brain waves) or nuclear medical scans (FDG PET, DAT scan, SPECT scan) are carried out for diagnostic purposes, their results will also be recorded.

In addition, approval is requested for a blood sample incl. a molecular biological examination and, if necessary, further study-related examinations such as 3T-MRI and neuropsychological testing. In addition, with the appropriate consent, a person from the personal environment is interviewed about symptoms in everyday life.

A full set of information about the study can be downloaded here (in German only): Flyer DESCRIBE-FTD

Principle Investigator: Prof. Dr. Anja Schneider
Begin: 2016
Status: multicentric, ongoing, recruiting active

Study Coordination / Project Management

Dr. Nina Roy
 nina.roy@dzne.de
 +49 228 43302-839
 +49 228 43302-812

Participating sites

Berlin

DZNE
Charité
 – Campus Benjamin Franklin, Klinik für Psychiatrie und Psychotherapie
Local principle investigator: 
PD Dr. Oliver Peters
Local contact: 
+49 30 450-540077

DZNE
Charité
 - Campus Charité Mitte, Abt. für Neuropsychiatrie & Labor für Molekulare Psychiatrie
Local principle investigator: 
Prof. Dr. Josef Priller
Local contact: 
+49 30 450-617239

Bonn

DZNE
Universitätsklinikum Bonn 
- Klinik und Poliklinik für Neurologie
Local principle investigator: 
Prof. Dr. Thomas Klockgether
Prof. Dr. Ullrich Wüllner
Local contact: 
+49 228 287-15726

DZNE
Zentrum für Klinische Forschung
Local principle investigator:
Dr. Annika Spottke
Local contact:
+49 228 43302-810

DZNE
Universitätsklinikum Bonn 
- Klinik für Neurodegenerative Erkrankungen und Gerontopsychiatrie
Local principle investigator:
Prof. Dr. Anja Schneider
Prof. Dr. Michael Heneka
Prof. Dr. Michael Wagner
Local contact: 
+49 228 287-16367

Dresden

DZNE
Universitätsklinikum TU Dresden 
- Klinik und Poliklinik für Neurologie
Local principle investigator:
Prof. Dr. Dr. Andreas Hermann
Local contact:
+49 351 458-2524

Göttingen

DZNE
Universitätsmedizin Göttingen
- Gedächtnisambulanz, Klinik für Psychiatrie und Psychotherapie
Local principle investigator: 
Prof. Dr. Jens Wiltfang
Dr. Sarah Trost
Local contact:
+49 551 39-8469
+49 551 39-66100

DZNE
Universitätsmedizin Göttingen
- Abteilung Neurologie
Local principle investigator:
Prof. Dr. Inga Zerr
Prof. Dr. Mathias Bähr
Local contact:
+49 551 39-8401

Magdeburg

DZNE
Otto-von-Guericke-Universität Magdeburg 
- Institut für Kognitive Neurologie und Demenzforschung
Local principle investigator:
Prof. Dr. Emrah Düzel
Prof. Dr. Notger Müller
Prof. Dr. Peter Nestor
Local contact:
+ 49 391 672-4524
+ 49 391 672-4555

Munich

DZNE
Klinikum der Universität München 
- Institut für Schlaganfall- und Demenzforschung (ISD)
Local principle investigator:
Prof. Dr. Martin Dichgans
PD Dr. Katharina Bürger
Local contact:
+49 89 440046-051
+49 89 440046-052

DZNE
Klinikum der Universität München 
- Neurologische Klinik und Poliklinik
Local principle investigator: 
PD Dr. Johannes Levin​​​​​​​
Local contact: 
+49 89 4400-74828
+49 89 4400-46467

Rostock/Greifswald

DZNE
Universitätsklinikum Rostock 
- Klinik und Poliklinik für Psychosomatik und Psychotherapeutische Medizin, Zentrum für Nervenheilkunde
Local principle investigator:
Prof. Stefan Teipel
Local contact:
+49 381 4949-628

DZNE
Universitätsklinikum Rostock 
- Klinik und Poliklinik für Neurologie
Local principle investigator:
PD Dr. Johannes Prudlo
Local contact:
+49 381 4949-170

Tübingen

DZNE
Universitätsklinikum Tübingen 
- Zentrum für Neurologie, Abteilung Neurodegenerative Erkrankungen
Local principle investigator:
Prof. Dr. Thomas Gasser
PD. Dr. Matthias Synofzik
Local contact:
+49 7071 298-5660

Info-Hotline

Thursdays 1:30-4:30 pm

Patients +49 800-7799001

(free of charge)

Professionals +49 180-779900

(9 Cent/Min. German landline, mobile and out of Germany possibly more expensive)