DESCRIBE

A DZNE Clinical Registry Study of Neurodegenerative Diseases

Background and aims

The aim of the DESCRIBE study is to use the results obtained in the context of normal patient care, together with the results of studies on biomaterials (blood, nerve water, saliva and urine) including genetic tests, for scientific purposes and thus to increase knowledge of neuro-degenerative diseases and thus create the conditions for better therapies.

In the long term, the data analyses are expected to shed light on the causes of neurodegenerative diseases, and to improve the possibilities for early and differential diagnosis.

Overview

The examinations carried out in the framework of routine care, including MRI and PET scans, will be conducted in accordance with standardized formats, defined via consensus of the DZNE sites. The results of the examinations, along with pertinent collected biomaterial samples, will be used for scientific research. This work is expected to improve our understanding of neurodegenerative diseases, across multiple diseases. The clinical registry study will include patients with such conditions as Alzheimer's, frontotemporal dementias, Parkinson's disease (including atypical Parkinson's syndromes, such as progressive supranuclear palsy (PSP), amyotrophic lateral sclerosis (ALS), ataxias and/or vascular changes such as those occurring following strokes and in connection with cerebral amyloid angiopathy.

Course of the study

For the DESCRIBE study, the test results obtained within the framework of routine medical care are recorded. These include medical history, medications taken, clinical neurological examination findings and the results of, for example, memory, language and motor skills assessments. If 3T magnetic resonance imaging (3T-MRI), electroencephalography (EEG; measurement of brain waves) or nuclear-medical examinations (FDG-PET, DAT-Scan, SPECT examinations) have been performed in the course of diagnostics, these results will also be recorded.

In addition, approval is requested for a blood sample as well as, 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 asked about symptoms in everyday life.

The exact course of studies is explained by a study physician.
The collection of the data is usually carried out annually.
A full set of information about the study can be downloaded here (in German only): Flyer DESCRIBE

Principle Investigator: Prof. Dr. Thomas Klockgether
Start of the study: 2015
Status: multi centric, ongoing, recruiting active

Study Coordination / Project Management

Dr. Daniel Hoffmann
 daniel.hoffmann@dzne.de
 +49 228 43302-837
 +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

DZNE
Charité 
- Campus Virchow-Klinikum, Centrum Neurologie, Neurochirurgie und Psychiatrie
Local principle investigator: 
Prof. Dr. Andrea A. Kühn
Local contact:
+49 30 450-660203

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 Psychiatrie und Psychotherapie
Local principle investigator: 
Prof. Dr. Markus Donix​​​​​​​
Local contact:
+49 351 458-7136

DZNE
Universitätsklinikum TU Dresden 
- Klinik und Poliklinik für Neurologie
Local principle investigator:
Prof. Dr. Alexander Storch
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

+49 551 39-8401

Cologne

DZNE
Universitätsklinikum Köln
 – Klinik und Poliklinik für Psychiatrie und Psychotherapie
Local principle investigator: 
Prof. Dr. Frank Jessen
Local contact:
+49 221 478-32888

DZNE
Universitätsklinikum Köln
 – Klinik und Poliklinik für Neurologie
Local principle investigator: 
Prof. Dr. Thilo von Eimeren
Local contact:
+49 221 478-98842

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
Prof. Dr. Stefan Vielhaber
Prof. Dr. Thomas Wolbers
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 4400-46051
+49 89 4400-46052

DZNE
Klinikum der Universität München 
- Klinik und Poliklinik für Psychiatrie und Psychotherapie
Local principle investigator: 
Prof. Dr. Robert Perneczky
Local contact:
+49 89 7095-55772

DZNE
Klinikum rechts der Isar der Technischen Universität München 
- Neurologische Klinik und Poliklinik im Neuro-Kopf-Zentrum
Klinische DZNE Studieneinheit, Zentrum für Schlaganfall- und Demenzforschung
Local principle investigator:
Prof. Dr. Günter Höglinger
Local contact:
+49 89 4400-46452
+49 89 4400-46455

DZNE
Friedrich-Baur-Institut an der Neurologischen Klinik

Local principle investigator: 
Prof. Dr. Thomas Klopstock
Local contact:
+49 89 4400-57400

DZNE
Klinikum der Universität München 
- Neurologische Klinik und Poliklinik
Local principle investigator: 
PD Dr. Johannes Levin​​​​​​​
Local contact:
+49 89 4400-46458
+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. Christoph Kamm
PD Dr. Johannes Prudlo
Prof. Dr. Alexander Storch
Local contact:
+49 381 4949-170

Tübingen

DZNE
Universitätsklinikum Tübingen 
- Klinik für Psychiatrie und Psychotherapie
Local principle investigator:
Prof. Dr. Christoph Laske
Local contact:
+49 7071 298-2344

DZNE
Universitätsklinikum Tübingen 
- Zentrum für Neurologie, Abteilung Neurodegenerative Erkrankungen
Local principle investigator:
Prof. Dr. Thomas Gasser
Prof. Dr. Ludger Schoels
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)

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