Quality of life of patients with multi-organ autoimmune disease and its relationship to patient-centred care - Main study

Quality of life of patients with multi-organ autoimmune disease and its relationship to patient-centred care - Main study - Qualy-GAIN

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00033609

Enrollment

300

Registered

2024-06-26

Start date

2024-07-23

Completion date

Unknown

Last updated

2025-10-06

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

Conditions

Genetic multi-organ autoimmune diseases

Interventions

Group 1: This is a prospective observational study that does not contain an intervention. The study focuses on the development and psychometric testing of questionnaires and the examination of longitu

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: - Multi-organ autoimmune disease - Sufficient knowledge of the German language to answer questionnaires

Exclusion criteria

Exclusion criteria: -No sufficient knowledge of German

Design outcomes

Primary

Measure	Time frame
Since the focus of the planned study is not an intervention evaluation, but rather on questionnaire development and exploratory research into patient preferences, quality of life and health status of patients with multi-organ autoimmune diseases, no primary and secondary outcomes are defined. Relevant outcome measures are listed below: disease-specific health status, health-related quality of life, treatment preferences and fulfillment of these preferences.	—

Measure

Time frame

Since the focus of the planned study is not an intervention evaluation, but rather on questionnaire development and exploratory research into patient preferences, quality of life and health status of patients with multi-organ autoimmune diseases, no primary and secondary outcomes are defined. Relevant outcome measures are listed below: disease-specific health status, health-related quality of life, treatment preferences and fulfillment of these preferences.

—

Secondary

Measure	Time frame
Please see above	—

Countries

Germany

Contacts

Public ContactMarianne Bayrhuber-Habeck

UNIVERSITÄTSKLINIKUM FREIBURG Institut für Medizinische Biometrie und Statistik Sektion Versorgungsforschung und Rehabilitationsforschung (SEVERA)

marianne.bayrhuber@uniklinik-freiburg.de+4915757198346

Outcome results

None listed

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