Prospective quality of life study in patients with Wilson Disease

Prospective quality of life study in patients with Wilson Disease - QoL

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00037187

Enrollment

180

Registered

2025-06-12

Start date

2025-01-07

Completion date

Unknown

Last updated

2026-01-12

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

Conditions

E83.0

Interventions

Group 1: Collection of SF-12, PSQI, ISI, Epworth, Chalder, PHQ-9, GAD-7, PSS, Flei, and MOCA in Wilson's disease patients at baseline and then every 6 to 12 months thereafter.

Eligibility

Sex/Gender

All

Age

16 Years to No maximum

Inclusion criteria

Inclusion criteria: Confirmed Wilson's disease

Exclusion criteria

Exclusion criteria: no confirmed Wilson's disease.

Design outcomes

Primary

Measure	Time frame
Primary endpoint: Quality of life in Wilson's disease Time points of assessment: Baseline and then every 6 to 12 months thereafter Measurement instruments: Using the aforementioned questionnaires and measurement tools (SF-12, PSQI, ISI, Epworth, Chalder, PHQ-9, GAD-7, PSS, Flei, and MOCA)	—

Secondary

Measure	Time frame
Influence of treatment regimens (Trientine, D-Penicillamine, Zinc) as well as the duration of previous treatment Analysis of various markers of copper homeostasis in correlation with the patient's copper chelation status Moca test	—

Countries

Germany

Contacts

Public ContactIsabelle Mohr

Universitätsklinikum Heidelberg

isabelle.mohr@med.uni-heidelberg.de062215632818

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Feb 4, 2026