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Following quality of life for people and families

People with Parkinson's and relatives complete digital questionnaires so researchers can follow changes in wellbeing over time.

Learning by observing or collecting information · Study reference: DRKS00023598

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.

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Looking for volunteers

Start (reported date)
2026-07-01

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?

Ages 30 years to 100 years · 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: Patients suffering from a clinical diagnosis of iPD according to the recent clinical diagnostic criteria (MDS criteria) iPD-stages of I – IV according to the Hoehn & Yahr scale (in the OFF state, i.e., without medication) Patients aged between between 30 and 100 years Patients with the ability to provide informed consent. In cases where participants lose their capacity to consent at follow-up visits (e.g., due to dementia, etc.), this participant will only be allowed to continue if a legal representative (proxy, guardian) provides informed consent to further par- ticipation on behalf of the participant. In this case, the legal representatives will be provided with a separate consent form Exclusion criteria: Patients suffering from a clinical diagnosis of atypical Parkin- son’s syndrome in a first instance. Patients enrolled who were later characterized as atypical Parkinson syndroms will not be excluded. iPD-stages of V according to the Hoehn & Yahr scale (in the OFF stage, i.e. without medication) The use of magnetic fields in the MRI examination excludes the participation of persons who have electrical devices (e.g., cardiac pacemakers, medication pumps, etc.) or metal parts (e.g., screws after bone fracture) in or on their bodies Women who are pregnant will not receive MRI. Subjects who do not want to be informed about possible incidental findings are also not allowed to participate in the imaging part of the study
Full study name & original research details

Official study title

Digital recording and longitudinal observation of the holistic quality of life of Parkinson patients and their relatives - HessenKohorte2042

Short title used by the registry

Digital recording and longitudinal observation of the holistic quality of life of Parkinson patients and their relatives

Original description

Intervention: Group 1: Longitudinal observational survey of patients with Parkinson's disease and their relatives No intervention planned Primary outcome: Parkinson's disease patients holistic quality of life - measurements take place every half year in the form of a questionnaire Secondary outcome: Symptom severity, affective symptoms, cognitive decline, sleep quality at six-monthly assessments. In addition, structural changes in the brain will be assessed by cranial imaging and metabolic changes will be assessed in blood, saliva, urine and stool samples. These changes are recorded through annual presentations and sample collection or measurements. In addition, quality of life, coping, resilience and family burden are assessed. Measurements are also taken every six months using questionnaires.

Conditions reported: G20;Parkinson disease

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: Longitudinal observational survey of patients with Parkinson's disease and their relatives No intervention planned
Phases
Not reported
Sponsor
Universitätsklinikum Gießen und MarburgStandort Marburg
Start date reported by registry
2026-07-01 (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.

Lena Schweinsberger · 064215865439 · hessenkohorte@med.uni-marburg.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.