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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.

Contact Information:

Mrs Miriam Stumpf
+31 88 97 272 72
M.K.Stumpf@prinsesmaximacentrum.nl


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Be Part of Research - Trial Details - MyKids: molecular profiling of non-rhabdomyosarcoma soft tissue sarcoma (NRSTS) in children, adolescents and young adults
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MyKids: molecular profiling of non-rhabdomyosarcoma soft tissue sarcoma (NRSTS) in children, adolescents and young adults

Recruiting

Open to: All Genders

Age: Mixed

Utrecht

Medical Conditions

Non-Rhabdomyosarcoma Soft Tissue Sarcoma (NRSTS)

This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.


Soft tissue sarcomas (STS) can arise anywhere in the body. Soft tissues are e.g. muscles, connective tissue, fat tissue or blood vessels. About half of the soft tissue sarcomas in children and young adults are so-called 'rhabdomyosarcomas'. The other half consists of all kinds of different and rare soft tissue sarcomas, the so-called non-rhabdomyosarcoma soft tissue sarcomas (NRSTS).

There is not much known yet about the origin, behaviour and characteristics of this other, very heterogenous, group, the NRSTS, especially in children and young adults where these tumors are extremely rare.

The origin of many types of childhood cancer lies within the genetic composition of the tumor. That is what we call the molecular profile. Therefore, more and more medicines are being developed specifically against certain changes within the genetic material (DNA) or of the macromolecules that are involved in the expression of the genetic information (RNA) of the tumors.

In this study we want to analyze these rare tumors down to the smallest detail in our laboratories. The aim of this study is to make a complete molecular profile of the participants' tumor cells and to make them grow in the laboratory on a petri dish to form an 'organoid'. An organoid is a sort mini-organ cultured from the cells, in this case obtained from the biopsied material.

We hope to learn more about the origin, development and behaviour of these rare tumors and also whether we will be able to detect this tumor with simple blood analysis in the future. It might also become possible to develop targeted drugs against NRSTS in the future, or that already existing drugs could be given to a certain type of tumor based on our findings.

Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.  

The recruitment start and end dates are as follows:

01 Sep 2022 01 Sep 2026

Additional blood samples will be collected if the patient consents to participate in WP4, this is optional.


Patients aged 0 - 25 years, with recently diagnosed NRSTS.

You can take part if:



You may not be able to take part if:


1. Relapsed NRSTS, not included at diagnosis2. No written informed consent


Below are the locations for where you can take part in the trial. Please note that not all sites may be open.

  • Princess Máxima Center for pediatric oncology
    Heidelberglaan 25
    Utrecht
    3584 CS

A possible benefit of participating in this study is that the initial diagnosis is (re)-evaluated by a Diagnostic Advisory Board of experts in the field and that in some individual cases the participant’s oncologist might decide to adapt the standard treatment in consequence of the results of the diagnostics performed in the scope of this study.
Furthermore, participation in this study contributes to a better characterization and understanding of NRSTS in children.
The risks of study participation are negligible, as the biopsy will be performed as part of standard of care. Participation in the work packages associated with additional blood sampling is optional. For interpretation of sequencing results, comparison with germline sequencing is needed, for which an extra tube of blood is needed, to be collected in combination with regular blood withdrawals. In most countries this is already included in the standard of care.
Additional material collected for study purposes are the blood samples for the detection of circulating tumor DNA (liquid biopsies; WP4). These blood withdrawals will be combined with standard of care blood withdrawals as much as possible.

Mrs Miriam Stumpf
+31 88 97 272 72
M.K.Stumpf@prinsesmaximacentrum.nl



The study is sponsored by Princess Máxima Center and funded by Stichting Kinderen Kankervrij.



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Read full details for Trial ID: ISRCTN12831761
Last updated 15 July 2022

This page is to help you find out about a research study and if you may be able to take part

You can print or share the study information with your GP/healthcare provider or contact the research team directly.   

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