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
DZNE Clinical Research Platform
projektmanagement.kf@dzne.de