Cohort Studies

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-FTD (DZNE - Clinical Registry Study on Frontotemporal Dementia (FTD))

The aim of the DESCRIBE-FTD study is to describe in detail the course of FTD in its various clinical manifestations. The aim is to gain a better understanding of the underlying pathology and to identify parameters that enable diagnosis and prediction of the course of the disease.

DESCRIBE-PD (DZNE - Clinical Registry Study on sporadic and familial Parkinson's syndromes (PD))

The aim of the DESCRIBE-PD cohort is to enable the identification of subgroups of the disease with different forms of progression and to identify their genetic causes as well as specific biomarkers for the earliest possible diagnosis.

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.

DIAN (Longitudinal Study on Dominantly Inherited Alzheimer's Disease)

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.