DESCRIBE
DZNE – Klinische Registerstudie Neurodegenerativer Erkrankungen
Background an aims
The aim of the DESCRIBE study is to use information collected during routine clinical care together with the results of analyses of biological samples (e.g. blood, cerebrospinal fluid, and tear fluid) for scientific research. Depending on the specific research question, genetic analyses may also be performed.
By collecting and evaluating these data over the long term, the study aims to improve our understanding of neurodegenerative diseases. The goal is to better understand how these diseases develop and progress, as well as to advance methods for early and differential diagnosis. The knowledge gained from the DESCRIBE study is intended to provide the foundation for the development of more precise diagnostic approaches and future targeted therapies.
Overview
The DESCRIBE study is a longitudinal, multicentre observational study conducted by the German Center for Neurodegenerative Diseases (DZNE). It comprises several substudies focusing on different neurodegenerative diseases. The registry includes individuals with Alzheimer's disease, frontotemporal dementia (FTD), Parkinson's disease and atypical parkinsonian syndromes such as progressive supranuclear palsy (PSP), amyotrophic lateral sclerosis (ALS), as well as vascular disorders, for example following a stroke. Depending on the disease and the specific scientific research question, additional assessments are performed within the respective substudies.
Course of the Study
Before the study begins, the study physician will explain the examinations to you and discuss the study procedures with you. During this discussion, you will of course have the opportunity to ask questions. All participants in the DESCRIBE study undergo a standardized assessment.
If you agree to participate in the study, this may include:
- a questionnaire covering your medical history, including your current medications,
- a neurological examination,
- assessments of cognitive function (e.g. memory, language, and concentration) as well as other disease-specific symptoms,
- collection of findings obtained during routine clinical care (e.g. MRI, EEG, or nuclear medicine examinations, if available),
- a blood sample for the analysis of biochemical and genetic markers,
- depending on the sub-study, additional study-specific assessments, such as a research MRI scan or a lumbar puncture,
- with your consent, an interview with a person close to you regarding changes in your everyday functioning.
Data are generally collected once a year.
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.
Principal Investigator: Prof. Dr. Gabor Petzold
Start of the study: 2015
Status: multi centric, ongoing, recruiting active