Multi-site Cohort Studies of the DZNE

ARCA (Autosomal-Recessive Cerebellar Ataxias)

In this DZNE network research project (Autosomal Recessive Cerebellar Ataxia Registry, ARCA registry), modern methods are being used to search for new ataxia genes and biomarkers in autosomal recessive ataxias and early onset ataxias with onset before the age of 40.

DANCER (Establishment of a Recruitment Pool of Potential Study Participants, of Realtives and a Control Group for DZNE Studies)

One focus of these studies is the identification of early, specific changes, for example in the blood, so that the diagnosis of a neurodegenerative disease such as dementia or Parkinson's can be made at a very early stage. This enables a better understanding of the diseases and supports the development of new forms of therapy.

DANCER-FTD (Recruitment of Realtives and a Control Group for the DESCRIBE-FTD Study)

In order for us to assess study outcomes of patients with neurological frontotemporal dementia (FTD), comparative studies with relatives of patients with FTD as well as interested individuals without a diagnosis of neurodegenerative disease are needed.

DANCER-PSP (Recruitment of Realtives and a Control Group for the DESCRIBE-PSP Study)

Comparative studies with relatives of patients with PSP and interested individuals without a diagnosis of neurodegenerative disease are needed to assess study outcomes of patients with progressive supranuclear palsy (PSP).

DESCRIBE (DZNE - Clinical Register Study of neurodegenerative Disorders)

The aim of the DESCRIBE study is to use the examination results obtained in the course of normal patient care together with findings from diagnostics on biomaterials, including genetic analysis, for scientific purposes.

DESCRIBE-Cognition (DZNE - Klinische Registerstudie zur kognitiven Leistungsfähigkeit bei Alzheimer-Erkrankungen)

Alzheimer's disease is the most common cause of dementia. Although research has made progress in recent years, there are still many unanswered questions, particularly regarding the progression of the disease and early changes.

DESCRIBE-FTD/ALS (DZNE Clinical Registry Study on Frontotemporal Dementia (FTD) & on Amyotrophic lateral sclerosis (ALS))

The aims of this studies are to describe the course of FTD and 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.

DESCRIBE-PD (DZNE Clinical Registry Study of Neurodegenerative Diseases on Patients with sporadic and familial Parkinson's syndromes (PD) and Idiopathic REM Sleep Behavior Disorder)

Longitudinal clinical observation is intended to identify subgroups of the disease with different clinical courses and determine their causes. In addition, the study aims to identify specific biomarkers to enable the earliest possible diagnosis and prognosis, as well as to differentiate the condition from other neurodegenerative diseases. Individuals with idiopathic REM sleep behavior disorder will also be included, as this may be a precursor to Parkinson’s disease.

DESCRIBE-PSP (DZNE - Clinical Registry Study on Progressive Supranuclear Paresis (PSP))

The aim of the DESCRIBE-PSP study is to document the early and atypical course of PSP in order to enable improved diagnostic criteria and therapy studies in the early course of the disease.

DESCRIBE-Treatment (DZNE - Clinical Registry Study on the documentation of innovative therapies)

The DZNE therefore aims to examine participants over time through regular assessments as part of this study. The study is open to people who are being treated with newly approved therapies or new therapies that become available in the future.

DIAN (Dominantly Inherited Alzheimer's Disease Network)

Hereditary Alzheimer's disease, caused by gene mutations, is extremely rare - but those who carry it inevitably develop dementia, usually even before the age of 60. The DIAN network wants to gain insights from this for the very common sporadic Alzheimer's dementia and future therapies.

DZNE Clinical Ataxia Network

Overview of studies belonging to the DZNE Clinical Ataxia Network.

DZNE-CAA (DZNE Cerebral Amyloid Angiopathy Study)

Cerebral amyloid angiopathy (CAA) is a disease of the vessels in the brain in which proteins, known as amyloid, are deposited in the walls of the vessels. There are initial indications of possible mechanisms and biomarkers that influence the course of the disease, but there are still many unanswered questions.

ESMI (European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative)

The aim of this study is to assemble a trial-ready cohort of sufficient size consisting of patients with spinocerebellar ataxia type 3 (SCA 3) and first-degree relatives, so-called at-risk individuals, for future drug trials.

HSP-Net (Networking Project on Hereditary Spastic Paraplegia)

Spastic spinal paralysis (HSP) is a rare, often hereditary, slowly progressive disease characterized by a spastic gait disorder. The HSP project involves the establishment and conduct of a multicenter study of the natural longitudinal course of hereditary spastic spinal paralysis.

SCA Registry (Registry for Spinocerebellar Ataxies (SCA))

The goals of the SCA Registry are to characterize the natural history of the disease, identify prognostic factors, and develop novel imaging and biochemical biomarkers. By including at-risk individuals, we place a special focus on studying the preclinical disease phase.

SPORTAX-NHS (Observational Study on Adult Onset Sporadic Ataxias)

The SPORTAX study aims to precisely characterize the two forms of the disease and to compare the courses of the disease. In addition, factors are to be identified that allow a more precise assignment of the disease at an early stage and that can influence the development of the disease.