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Massive german registry aims to unlock secrets of rare sarcomas

NCT ID NCT04122872

Knowledge-focused Sponsor: Institut für Klinische Krebsforschung IKF GmbH at Krankenhaus Nordwest Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 registry is collecting information from up to 9,000 people in Germany with sarcoma or carcinosarcoma. Researchers will track how often different subtypes occur, how they progress, and what treatments patients receive. The goal is to better understand these rare cancers and improve future care.

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 registry could provide crucial insights into how common and how serious different sarcoma subtypes are, helping guide future research and treatment strategies.
What could go wrong
As an observational registry, this study does not test any new treatment, so it will not directly improve patient outcomes. The data quality depends on consistent reporting from many hospitals.

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

About 9,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Nov 2018

Expected to finish

Jan 2038

An estimate. End dates often move.

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 ≥18 years, verified for bone or soft tissue sarcomas including bone and soft tissue tumors with borderline histological results or with unclear histological dignity (like giant cell tumors of the bone \[GCTB\], desmoid tumors, atypical lipomatous tumors) as well as carcinosarcomas - independent of kind of therapy and therapy line. Thus, the registry is open for all subtypes of sarcomas and CS.

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: * Histological verified bone or soft tissue sarcomas including bone and soft tissue tumors with borderline histological results or with unclear histological dignity like giant cell tumors of the bone (GCTB), desmoid tumors, atypical lipomatous tumors etc. - independent of therapy form and therapy line - or Histological verified sarcomatoid carcinomas/ carcinosarcomas: tumors with histological, cytological, or molecular properties of both epithelial tumors ("carcinoma") and mesenchymal tumors ("sarcoma") - independent of therapy form and therapy line. * Signed informed consent form or equivalent (s. chapter 10) * Age ≥18 years Exclusion Criteria: * none

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Conditions

The condition(s) this trial relates to.

bone sarcoma carcinosarcoma osteosarcoma sarcoma soft tissue sarcoma

As listed by the trial registrant

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

Carcinosarcoma Sarcoma Sarcoma of bone Sarcoma,soft tissue

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    21 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Asklepios Klinik St. Georg

    RECRUITING

    Hamburg, 20099, Germany

  • Barmherzige Brüder Regensburg

    RECRUITING

    Regensburg, Germany

  • Chirurgische Universitätsklinik Mannheim

    RECRUITING

    Mannheim, Germany

  • HELIOS Klinikum Bad Saarow

    RECRUITING

    Bad Saarow, Germany

  • HELIOS Klinikum Berlin-Buch

    RECRUITING

    Berlin, Germany

  • Klinikum Frankfurt Höchst

    RECRUITING

    Frankfurt, Germany

  • Klinikum Nürnberg

    RECRUITING

    Nuremberg, Germany

  • Krankenhaus Nordwest KHNW

    RECRUITING

    Frankfurt, Germany

  • Uniklinik Freiburg

    RECRUITING

    Freiburg im Breisgau, Germany

  • Uniklinikum Leipzig

    RECRUITING

    Leipzig, Germany

  • Uniklinikum Regensburg

    RECRUITING

    Regensburg, Germany

  • University Hospital Halle (Saale)

    RECRUITING

    Halle, Germany

  • Universitätsklinikum Erlangen

    RECRUITING

    Erlangen, Bavaria, 91054, Germany

  • Universitätsklinikum Erlangen

    RECRUITING

    Erlangen, Germany

  • Universitätsklinikum Tübingen

    RECRUITING

    Tübingen, Baden-Wurttemberg, 72076, Germany

  • Universitätsklinikum Würzburg

    RECRUITING

    Würzburg, Germany

  • Universitätsmedizin Greifswald

    RECRUITING

    Greifswald, Germany

  • Universitätsmedizin Göttingen

    RECRUITING

    Göttingen, Germany

  • Universitätsmedizin Mainz

    RECRUITING

    Mainz, Germany

  • Vivantes Klinikum Berlin-Spandau

    RECRUITING

    Berlin-Spandau, Germany

  • Westfälische Wilhelms-Universität Münster

    RECRUITING

    Münster, Germany

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