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A long-term register of neurological diseases

This study follows symptoms, health information and samples over time to understand Parkinson's and other neurological conditions.

Learning by observing or collecting information · Study reference: DRKS00008301

Plain-language introduction written with AI from the registry; not independently checked by a clinician. Read the original details below ↓

This registry record was last updated over six months ago, or its update date is missing. Recruitment may have changed. Confirm with the team before making plans.

Open the official registry record ↗

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Looking for volunteers

Start (reported date)
2015-08-31

Planned dates can move. A study finishing does not tell us when a paper will be published.

No results summary has been confirmed in the registry records we imported. See connected papers below; we keep checking after recruitment ends.

Changes we have recorded
  • 2026-10-11 — recruiting

These are dates we observed a change, not necessarily the dates it happened.

Papers connected to this study

No connected paper has been found yet. The tracker checks the growing library for study identifiers and registry-linked publications.

Who can join?

Age 18 years and over · Ask the team who can join

These are starting points, not the full rules. The research team can tell you whether the study is right for your situation.

Read all the rules for taking part

Sex eligibility reported by registry: all

Inclusion criteria: - informed consent - diagnosis of a neurodegenerative disorder or a cerebro-vascular disease -Age > 18 -Willingness to undergo MRI scan(s) and/or lumbar puncture(s -Consent of the legal representative and Co-Consent for incapacitated subjects Exclusion criteria: - clinically unstable or serious diseases - existing or past passed mental, psychiatric or physical illness that by the opinion of the study physician precludes participation in the study --------------------------------------------------- --------------- exclusion criteria for the optional MRI scan: - electrical implants such as pacemakers or perfusion pumps - pregnancy and pronounced claustrophobia - concomitant medications that have a strong sedating effect - presence of ferromagnetic or electrically conductive implants such as aneurysm clips, surgical clips, prostheses, artificial hearts, flaps with metal parts, metal pieces, large tattoos, permanent makeup or steel implants
Full study name & original research details

Official study title

DESCRIBE - DZNE - clinical registry study of neurodegenerative disorders - DESCRIBE

Short title used by the registry

DESCRIBE - DZNE - clinical registry study of neurodegenerative disorders

Original description

Intervention: Group 1: Registration of clinical features, process, genetics and pathophysiology of neurodegenerative diseases and cerebro-vascular originated diseases. Documentation of progress through annual visits. Use of clinical and psychiatric scales, clinical examination (incl. MRI scans), sampling of biomaterial (blood, cerebrospinal fluid, tear fluid and nasal secretion), analysis of oculomotor function, gait and balance and speech. Depending on the present disease, cognitive performance (eg CERAD test battery) and motor skills are evaluated and questionnaires used to detect depressive symptoms or sleeping behaviour will be evaluated. An informant named by the subject is asked about the symptoms of the subject in everyday life. Primary outcome: The aim of this study is to establish a clinical register to represent clinic, history, genetics and pathophysiology of neurodegenerative diseases (Alzheimer Disease, fronto-temporal dementia, Parkinson disease, progressive supranuclear palsy, amyotrophic lateral sclerosis, ataxias) and cerebro-vascular originated diseases (after stroke amyloid angiopathy). In the long term the development of neurodegenerative diseases are better understood through the analysis of data and the possibilities of early and differential diagnosis can be improved. Annual follow-up visits are pursued. Secondary outcome: Another aim of the DESCRIBE Register trial is quickly well-characterized participants to contact for participating in other studies, where the people have agreed to this approach.

Conditions reported: vascular dementiaStroke G30.0 G30.1 G30.8 G30.9 G20 G21 G22 G31.82 G23.1 G11.1 G11.0 G11.2 G11.3 G11.4 G11.8 G11.9 G12.2 I68.0;Alzheimer disease with early onset;Alzheimer disease with late onset;Other Alzheimer disease;Alzheimer disease, unspecified;Parkinson disease;Secondary parkinsonism;Parkinsonism in diseases classified elsewhere;Lewy body dementia (LBD);Progressive supranuclear ophthalmoplegia [Steele-Richardson-Olszewski];Early-onset cerebellar ataxia;Congenital nonprogressive ataxia;Late-onset cerebellar ataxia;Cerebellar ataxia with defective DNA repair;Hereditary spastic paraplegia;Other hereditary ataxias;Hereditary ataxia, unspecified;Motor neuron disease;Cerebral amyloid angiopathy

Registry records for this study

Records are joined using registration identifiers. Titles alone do not establish that two studies are the same.

Study type
Observational
Interventions
Group 1: Registration of clinical features, process, genetics and pathophysiology of neurodegenerative diseases and cerebro-vascular originated diseases. Documentation of progress through annual visits. Use of clinical and psychiatric scales, clinical examination (incl. MRI scans), sampling of biomaterial (blood, cerebrospinal fluid, tear fluid and nasal secretion), analysis of oculomotor function, gait and balance and speech. Depending on the present disease, cognitive performance (eg CERAD test battery) and motor skills are evaluated and questionnaires used to detect depressive symptoms or sleeping behaviour will be evaluated. An informant named by the subject is asked about the symptoms of the subject in everyday life.
Phases
Not reported
Sponsor
Deutsches Zentrum für Neurodegenerative Erkrankungen e.V. (DZNE)
Start date reported by registry
2015-08-31 (reported)

Registry updated: Not reported · Status last verified by the registry submitter: Not reported

Registry records retrieved 2026-10-14 (UTC). Individual records may have older updates. Recruitment and eligibility must be confirmed with the study team.

Contact the research team

Public study contacts supplied to the registry. Ask whether recruitment is still open and what participation involves.

c/o Klinische Forschungsplattform · 0228 43302 810 · projektmanagement.kf@dzne.de

Study locations

Site status can differ from overall study status. “Status not reported” means local availability needs confirmation. Remote participation and travel arrangements must be checked with the team.

Facility not reported

Germany

Status not reported

The original descriptions and participation rules come from the registry. Participation is voluntary and does not guarantee benefit.