Clinical trial · Observational
Burden of Disease and Living Situation in Desmoid Patients
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
The main aim of the study is to assess the situation and quality of life of desmoid patients. Impaired areas of quality of life and the associated factors are to be identified. The survey is planned as a cross-sectional study (patient survey). Prevalent and incident desmoid patients will be identified at the University Hospital Mannheim and checked for eligibility. Quality of life and patient-reported data are collected by means of written questionnaires. Medical data is collected from patient files in the clinics. The aim is to include 100 patients. Descriptive analyses of the variables collected and regression models are planned as statistical analysis.
Conditions
Conditions (2)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Desmoid Tumor | Desmoid Fibromatosis | ALIAS | 0.90 |
| Quality of Life | — | UNRESOLVED | — |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| No Intervention | Other | — | UNRESOLVED |
Design
Arms and outcomes
Arms (1)
- label
- Desmoid Tumor Patients
- description
- People who have been diagnosed with a desmoid tumor after the age of 18
- interventionNames
- Other: No Intervention
Primary outcomes (1)
- measure
- Health-related Quality of Life (EORTC C30)
- timeFrame
- baseline
- description
- Health-Related Quality of Life Questionnaire
Secondary outcomes (3)
- measure
- The Brief Pain Inventory (BPI)
- timeFrame
- baseline
- description
- The BPI scale defines pain as follows: Worst Pain Score: 1 - 4 = Mild Pain. Worst Pain Score: 5 - 6 = Moderate Pain. Worst Pain Score: 7 - 10 = Severe Pain.
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
Inclusion Criteria: * Desmoid diagnosis (primary neoplasia, all stages) * Age ≥18 years at diagnosis Exclusion Criteria: * Inability to complete a structured questionnaire (insufficient language skills; dementia)
References
Publications (0)
Data not yet available