Clinical Research Study Overview

7T-TGA (high-resolution MRI imaging in TGA patients: a retrospective and prospective study)

High-resolution MRI imaging as evidence of a structural cause in transient global amnesia (TGA), in which there is disruption of anterograde and also retrograde memory such that newly learned or experienced material is not retained.

ABCD

The aim of this study is to investigate the influence of rituximab (Rixathon®) on the progression of disease in patients with amyotrophic lateral sclerosis (ALS) compared to a placebo. The study is funded by the German Federal Ministry of Education and Research (BMBF).

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.

COG-HF (Mechanisms of cognitive impairment in chronic heart insufficiency)

Chronic heart failure (chronically reduced pumping capacity) can lead to impairments in memory or other mental functions. The causes of this are still mainly unclear and will be investigated in this study.

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.

Education for relatives "Living with dementia"

Training series for relatives: Positive effects in care by providing background knowledge and showing possibilities in the daily handling of people with dementia as well as suitable relief and care strategies so that people with dementia can be cared for longer in the home.

ENABLE (Patient- and care-related benefits of amyloid PET imaging)

The aim of the ENABLE trial is to test whether amyloid PET screening has the potential to improve the care of dementia patients in the German health care system and thus contribute to the preservation or slowed loss of everyday functions.

EPND Glossary Feedback Survey

>>> This survey only addresses EPND members. <<< The European Platform for Neurodegenerative Diseases (EPND) Glossary was established to provide the basis for a consistent, high-quality use of terminology for neurodegenerative diseases.

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.

Locus Coeruleus-to-Pons Intensity Ratio as Clinical Biomarker for AD

This study investigates whether patients with different stages of dementia can be accurately diagnosed using LC-to-pons intensity ratio on neuromelanin-sensitive MRI images.

PROFA (Patient-reported, health economic and psychosocial outcomes in Friedreich Ataxia)

Investigation of the impact of Friedreich's ataxia on patient-related, health economic, and psychosocial outcomes using self-reported data collection via a patient-centered e-health app.

PROMINENT (Improving the management of Alzheimer’s disease)

PROMINENT is a collaborative pan-European public-private partnership funded through the Innovative Health Initiative (IHI). It will create a digital platform for precision medicine to improve the diagnosis and treatment of neurodegenerative disease and co-morbidities to assist clinicians with individualised decision support in the evaluation of patients with suspected cognitive impairment.

PROSA (A Low-burden High-frequency PROgnostic Digital Speech Biomarker to Improve Future Confirmatory ALS and FTD Trials)

Development and validation of a novel speech biomarker for the ALS-FTD disease spectrum based on speech measurements that can be collected repeatedly and remotely by telephone to assess three key symptom groups: Cognition (language, executive functions and memory), motor function and respiratory function.

Prospect-AD (Population-based screening over speech for clinical trials in Alzheimer’s Disease)

Subjective memory impairment (SCD) or mild cognitive impairment (MCI) may be associated with an increased risk of dementia later in life. Early preventive measures can potentially reduce the risk of dementia. This requires early detection of early signs of cognitive impairment.

REMINDer (Preparedness of German specialists and memory clinics to deliver early and accurate diagnosis for AD disease‐modifying treatment)

The DZNE is conducting a nationwide online survey among memory outpatient clinics and neurological and psychiatric medical practices to assess their ability to make an early and accurate diagnosis for disease-modifying treatment of Alzheimer's disease.

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.

VO659-CT01 (A study on Vo659 in the treatment of Spinocerebellar Ataxia Type 1, 3 and Huntington's disease)

This clinical trial is open to patients with SCA1, SCA3 and Huntington's disease, a group of rare, congenital genetic disorders that affect specific areas of the brain. The disorders can cause disturbances in balance, coordination, walking, swallowing and speech, as well as mental and psychological problems.