Investigation on the quality of life and patient-centered outcome measures of parents and children with polycystic kidney diseases

Status

Recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00021059

Enrollment

Registered

2020-06-12

Start date

2020-07-01

Completion date

Unknown

Last updated

2025-12-08

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

Conditions

Q61.1 Q61.2

Interventions

Group 1: struktured Interview Quality of life quesionnaires: - PedsQL 4.0 generic and ESRD module - Strengths and Difficulties Questionnaire (SDQ) - Ulmer Lebensqualitäts-Inventar für Eltern chronisch

Eligibility

Sex/Gender

All

Age

0 Years to 65 Years

Inclusion criteria

Inclusion criteria: Children and young adults between 0 and 25 years as well as their caregivers (over 18 years) who are able to understand the interview questions and filll out questionnaires.

Exclusion criteria

Exclusion criteria: lack of an interpreter when knowledge of German is insufficient to understand interview or questionnaire.

Design outcomes

Primary

Measure	Time frame
One-time quality of life scores (Pediatric Quality of Life inventory (PedsQL 4.0 including ESRD module), Strengths and Difficulties Questionnaire (SDQ), Impact on Family Scale (IFS), Ulmer Lebensqualitätsinventar für Eltern eines chronisch kranken Kindes (ULQIE)), list of priorities	—

Countries

Germany, Switzerland

Contacts

Public ContactCharlotte Gimpel

Innere Medizin IV, Universitätsklinikum Freiburg

charlotte.gimpel@uniklinik-freiburg.de+49 761 270 34010

Outcome results

None listed

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