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Sarcoma Patients' voices heard: new tool to measure what really matters

NCT ID NCT04071704

Knowledge-focused Sponsor: The Netherlands Cancer Institute Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This completed study with 654 sarcoma patients aims to create a better way to measure health-related quality of life. Current questionnaires miss key issues unique to sarcoma, like specific side effects and functional problems. By interviewing patients and healthcare professionals, researchers hope to develop a more sensitive tool that captures the real impact of treatment.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this could lead to a new questionnaire that better captures how sarcoma treatments affect patients' daily lives, helping doctors choose therapies that improve both survival and well-being.
What could go wrong
This is an observational study that does not test a treatment. It only aims to develop a measurement tool, so it will not directly improve health outcomes.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

654 people

The number who actually took part.

Started

May 2019

Finished

Sep 2024

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Adults with sarcoma, with all stages of disease. The primary types of treatments to be included, depending on sarcoma subtype, are chemotherapy/targeted therapy, radiotherapy, surgery, or a combination of these.

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Age at diagnosis 18 years or older * Having a confirmed diagnosis of sarcoma Exclusion Criteria: * Having any psychiatric condition or cognitive impairment that would hamper participation in interview/completion of self-reported questionnaires. * Patients with a Gastrointestinal Stroma Tumour (GIST) diagnosis, as they are quite unique in terms of type of disease and treatment. * Patients with Kaposi sarcoma, as this disease occurs quite often in people with AIDS * Patients with Carcinosarcoma as this disease is generally seen as a carcinoma

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Conditions

The condition(s) this trial relates to.

Personal Satisfaction sarcoma

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Sarcoma

Contacts and locations

Locations

  • Johannes Gutenberg University Mainz

    Mainz, Germany

  • Kiing Hussein Cancer Centre

    Amman, Jordan

  • University Hospital Carl Gustav Carus

    Dresden, Germany

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