DESCRIBE-PD
DZNE Clinical Registry Study of Neurodegenerative Diseases on Patients with sporadic and familial Parkinson's syndromes (PD)
Background and aims
Studies in recent years have shown that the symptoms of Parkinson's disease and its progression are very heterogeneous. A genetic predisposition, especially the rare monogenetic forms of the disease, can influence the disease, whereby it is assumed that there may also be different pathophysiological pathways of the disease for genetically determined forms. Despite considerable progress in recent years, a large part of the genetic variability underlying the risk of developing Parkinson's disease or determining the development of the disease is still unknown.
One aim of the DESCRIBE-PD cohort is to use longitudinal clinical observation to identify subgroups of the disease with different forms of progression and to identify their causes. In addition, subgroup-specific biomarkers are to be identified that will allow the earliest possible diagnosis and prognosis as well as a differential diagnosis from other neurodegenerative diseases.
Overview
DESCRIBE-PD is a longitudinal, multicenter observational study. 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 procedure. Further questions can be discussed in detail during the consultation. All participants in the DESCRIBE-PD study will receive a standardized assessment.
If you agree to participate in the study, there will be
- an interview about your medical history, including the presence of other neurodegenerative diseases in your family
- a neurological examination including motor symptons 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
The examinations are usually carried out once a year and take 2-4 hours.
Principle Investigator: Prof. Dr. Thomas Gasser
Start of the study: 2021
Status: multi centric, ongoing, recruiting active
Study Coordination / Project Management
DZNE Clinical Research Platform
projektmanagement.kf@dzne.de