Burden of Disease and Living Situation in Desmoid Patients

NCT ID: NCT06258421

Last Updated: 2025-08-24

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

100 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-10-01

Study Completion Date

2024-09-01

Brief Summary

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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.

Detailed Description

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Conditions

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Desmoid Tumor Quality of Life

Study Design

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Observational Model Type

CASE_ONLY

Study Time Perspective

PROSPECTIVE

Study Groups

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Desmoid Tumor Patients

People who have been diagnosed with a desmoid tumor after the age of 18

No Intervention

Intervention Type OTHER

Observatory Study

Interventions

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No Intervention

Observatory Study

Intervention Type OTHER

Eligibility Criteria

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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)
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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SOS Desmoid e.V.

UNKNOWN

Sponsor Role collaborator

Universitätsmedizin Mannheim

OTHER

Sponsor Role collaborator

Technische Universität Dresden

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Martin Eichler, Dr., M.Sc. / PHD

Role: PRINCIPAL_INVESTIGATOR

Universitätsklinikum Carl-Gustav-Carus Dresden

Locations

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Universitätsklinikum Carl-Gustav-Carus Dresden

Dresden, Saxony, Germany

Site Status

Countries

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Germany

Other Identifiers

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SR+BO-EK-388092023

Identifier Type: -

Identifier Source: org_study_id

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