DESCRIBE-FTD/ALS
DZNE Clinical Registry Study on Frontotemporal Dementia (FTD) & on Amyotrophic lateral sclerosis (ALS)
Background and aims
Frontotemporal dementias (FTDs) can affect patients' speech and behavior, as well as impair their memories. Amyotrophic lateral sclerosis (ALS) is the umbrella term for neurological disorders in which motor neurons are damaged, both in the peripheral nervous system and in the brain. Behavioral changes and memory problems may also occur.
The aims of the DESCRIBE-FTD/ALS study are to describe the course of FTD/ALS in detail, in their various characteristic clinical forms, to improve our understanding of the underlying pathology and to identify effective parameters for diagnosis and forecasting of the diseases' progression. This work is expected to illuminate the causes of the diseases, and to provide a basis for better therapies that can be applied at earlier stages of the diseases.
Overview
DESCRIBE-FTD/ALS is a longitudinal, multicenter observational study. Patients are examined at various points in time 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-ALS/FTD 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 and information about your medication
- an examination of your memory, concentration and mood
- 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 Investigators:
Prof. Dr. Anja Schneider (FTD)
Prof. Dr. Dr. Andreas Hermann (ALS)
Start of the study: 2016
Status: multi centric, ongoing, recruiting active