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, lacrimal fluid 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.
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