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OpenTrials
Completed

NCT Number: NCT06258421

Burden of Disease and Living Situation in Desmoid Patients

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.

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Key information

Conditions

Desmoid Tumor Desmoid Tumors Fibroma Neoplasms Neoplasms by Histologic Type Neoplasms, Connective Tissue Neoplasms, Connective and Soft Tissue Neoplasms, Fibrous Tissue Quality of Life

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Universitätsklinikum Carl-Gustav-Carus Dresden

Dresden, Saxony, 01307, Germany

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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)

Treatment and study plan

No intervention

Other

Observatory Study

Primary outcomes

  1. Health-related Quality of Life (EORTC C30)

    Time frame: baseline

    Health-Related Quality of Life Questionnaire

Secondary outcomes

  1. The Brief Pain Inventory (BPI)

    Time frame: baseline

    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.

  2. Reintegration to Normal Living (RNL) Index

    Time frame: baseline

    Reintegration to normal living as a proxy to quality of life

  3. Supportive Care Needs Survey

    Time frame: baseline

Sponsors and collaborators

Lead sponsor

Technische Universität Dresden

Other

Collaborators

  • SOS Desmoid e.V.
  • Universitätsmedizin Mannheim

Registry information

Acronym: PROSa Desmoid

Important dates

Study start
2023
Primary completion
2024
Study completion
2024
First posted
Feb 14, 2024
Registry last updated
Aug 24, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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