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. 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 biological 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. People with idiopathic REM sleep behavior disorder are also included, as this condition may be a precursor to Parkinson's disease.
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 procedures. Further questions can be discussed in detail during the consultation. All participants in the DESCRIBE-PD 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. Kathrin Brockmann
Start of the study: 2021
Status: multi centric, ongoing, recruiting active