DESCRIBE-PSP

DZNE Clinical Registry Study of Neurodegenerative Diseases in Patients with Progressive Supranuclear Paresis (PSP)

General

Progressive supranuclear paresis (PSP) is a rare, but probably underestimated and rapidly progressing neurodegenerative disease. The PSP is a form of so-called "atypical Parkinson's syndrome", in which, apart from the obligatory lack of movement (bradykinesia), which is typical for the diagnosis of Parkinson's syndrome, a disturbance of the postural instability (postural instability) with falls that occur early in the course of the disease as well as vertical eye paresis occurs in typical cases.

Background and aims

When the first clinical symptoms appear and at an early stage of the disease, it is often not yet possible to make a clear diagnosis. The diagnosis is further made more difficult by the occurrence of different clinical concomitance types with other clinical impairments in the foreground, such as predominant cognitive impairments, dominant speech impairment or Parkinson's syndrome. In these cases, the typical core characteristics of the disease usually appear clinically late or not at all.

The essential task of the DESCRIBE PSP study is therefore to document the early and atypical course of the disease in order to enable improved diagnostic criteria and therapy studies in the early course of the disease.

Overview

DESCRIBE-PSP is a longitudinal, multicenter observational study. Included are patients with suspected PSP. Patients are examined at various points in time (in 12-monthly intervals) during personal visits with a focus on the development of disease symptoms. In addition, biomaterials and MRIs are being investigated in order to monitor the course of the disease.

Course of the study

The individual visits include a medical assessment, biomaterial collection and, if necessary, a cranial MRI scan. A personal interview with the test person and an informant (life partner/personal acquaintance) completes the visit.

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

Principle Investigator: Prof. Dr. Günter Höglinger
Start of the study: 2016
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 Virchow-Klinikum, Centrum Neurologie, Neurochirurgie und Psychiatrie
Local principle investigator: 
Prof. Dr. Andrea A. Kühn
Prof. Dr. Matthias Endres​​​​​​​
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 investigatort:
Dr. Moritz Brandt
Prof. Dr. Alexander Storch
Local contact:
+49 351 458-2524

Göttingen

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

Cologne

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
Local contact:
+ 49 391 672-4524
+ 49 391 672-4555

Munich

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
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 Neurologie
Local principle investigator:
PD Dr. Johannes Prudlo
Prof. Dr. Alexander Storch
Local contact:
+49 381 4949-170

Tübingen

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