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

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

Status
Active, not recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00023598
Enrollment
1000
Registered
2021-03-24
Start date
2023-09-01
Completion date
Unknown
Last updated
2025-04-07

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

G20

Interventions

Group 1: Longitudinal observational survey of patients with Parkinson's disease and their relatives No intervention planned

Sponsors

Universitätsklinikum Gießen und MarburgStandort Marburg
Lead Sponsor

Eligibility

Sex/Gender
All
Age
30 Years to 100 Years

Inclusion criteria

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

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

Design outcomes

Primary

MeasureTime frame
Parkinson's disease patients holistic quality of life - measurements take place every half year in the form of a questionnaire

Secondary

MeasureTime frame
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.

Countries

Germany

Contacts

Public ContactSilvia Jung

Universitätsklinikum Marburg

hessenkohorte@med.uni-marburg.de064215865439

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 6, 2026