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
In the forefront of the study, the investigator will inform you about the examinations and study procedures. Further questions can be discussed in detail during the consultation. All participants in the DESCRIBE-PSP study will receive a standardized assessment.
If you consent to participate in the study, the following will take place:
- an interview about your medical history, including the presence of other neurodegenerative diseases in your family
- a neurological examination including motor symptoms and information about your medication
- an examination of your memory, concentration and mood
- examinations and questions about other non-motor symptoms
- a blood sampling to determine biochemical and genetic characteristics
- a scientific MRI-Scan
a lumbar puncture
Study participation
If you would like to take part in this study, please contact a study team in your area. You will find the contact details in the list of participating sites.
Principle Investigator: Prof. Dr. Günter Höglinger
Start of the study: 2016
Status: multi centric, ongoing, recruiting active