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 strongly influence the disease, whereby it is assumed that there may also be different (partial) causes 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 genetic 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 discuss the study procedure with you. You will of course have the opportunity to ask questions during the consultation. All participants in the DESCRIBE-PD study will receive a standardized assessment as part of routine clinical care at the university outpatient clinics of the participating sites.
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 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
In addition, you can take part in examinations that give us further insights into the development of neurodegenerative diseases in general. You can give us your individual consent for each of these examinations.
The examinations include
- further examinations on cognitive performance (e.g. memory performance, action planning, verbal fluency)
- correlation between the severity of the disease and structural and functional brain changes that can be detected by magnetic resonance imaging.
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
Dr. Johanna Brustkern
projektmanagement.kf(at)dzne.de