RecruitingOBSERVATIONAL

Multi-Institutional Registry for Malignant Peripheral Nerve Sheath Tumors

This study is creating a global database to collect important information from people diagnosed with a rare cancer called Malignant Peripheral Nerve Sheath Tumors (MPNSTs), particularly those connected to a genetic condition called neurofibromatosis type 1 (NF1). Researchers want to gather details about the cancer, how it's treated, and how patients are doing. They will also collect tissue samples from these cancers. By looking at information and samples from around the world, scientists hope to spot patterns and discover new insights into how these cancers develop and behave. This could lead to better ways to diagnose and treat MPNSTs in the future.

At a glance

Status

Recruiting

Sponsor

Washington University School of Medicine

Enrolment target

1,050

Start

28 Apr 2017

Estimated completion

30 Apr 2053

Malignant Peripheral Nerve Sheath Tumors

What is this study about?

Imagine a rare type of cancer that affects the protective covering of your nerves. This is called a Malignant Peripheral Nerve Sheath Tumor, or MPNST for short. Sometimes, these cancers are linked to a genetic condition called NF1. Because these cancers are rare, it's hard for doctors and scientists to gather enough information to truly understand them and find the best treatments.

This study, called a 'registry', is like building a very large, secure vault of information. Researchers worldwide will carefully put together details about patients with MPNSTs – things like their medical history, what their cancer looks like under a microscope, how it's been treated, and how they've responded. They'll also be collecting tissue samples from these cancers, both from the past and from new patients who agree to take part.

The main goal is to create a much clearer picture of MPNSTs, especially those connected to NF1. By having a huge amount of information and samples in one place, scientists hope to discover new patterns, genetic changes, and features of these cancers that they hadn't seen before. This knowledge is crucial for developing better diagnostic tools and, most importantly, more effective treatments for people affected by MPNSTs in the future.

Key takeaways

This is a worldwide study gathering information on rare nerve cancers (MPNSTs).
It aims to understand MPNSTs better, especially those linked to NF1.
Participation involves sharing medical records and tumor samples.
The goal is to find new ways to diagnose and treat these cancers.
This study doesn't involve new medication or treatments.
Your privacy is protected, and you can withdraw at any time.

Who may be eligible?

Joining this study is quite straightforward in terms of who can take part. If you have received a diagnosis of a Malignant Peripheral Nerve Sheath Tumor (MPNST), you could be eligible to participate.

The most important step is that you, or your parent or legal guardian if you are under 18, must agree to join the study by signing a consent form. This form explains everything about the study and what is involved.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I have been diagnosed with a Malignant Peripheral Nerve Sheath Tumor (MPNST).
I am willing for my medical records related to my MPNST to be shared with the study.
I agree for tumor samples (if available) to be used for research.
I am willing to sign a consent form, or my legal guardian is.

Answer every question to see your result.

What does participation involve?

If you decide to take part, the main thing you would be doing is allowing the study to collect information about your MPNST. This information includes details about your diagnosis, your medical history, any scans or tests you've had, and the treatments you've received. This data would be collected from your medical records.

The study also aims to collect samples of your tumor tissue, if available. For patients who are diagnosed in the future, if you agree, fresh tumor tissue removed during surgery might be collected for analysis. This is usually tissue that would otherwise be discarded after your medical care. Regular follow-up for this study would mainly involve updating your medical information as your treatment and health status evolve, rather than requiring extra visits or assessments from you personally. The total duration of your participation would be for as long as new, relevant information about your condition becomes available.

Potential risks and benefits

The main benefit of taking part is contributing to a global effort to better understand and potentially find new treatments for MPNSTs, which could help future patients. There are very few direct risks to you as a participant, as the study primarily involves collecting existing medical information and tumor samples that would otherwise be discarded. There are no experimental treatments involved. You are free to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (13)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Moffitt Cancer Center
Verified postcode
Tampa, United States· Completed
Johns Hopkins
Verified postcode
Baltimore, United States· Recruiting
National Institutes of Health (NIH)
Verified postcode
Bethesda, United States· Not yet recruiting
Dana Farber Cancer Institute
Verified postcode
Boston, United States· Withdrawn
University of Minnesota
Verified postcode
Minneapolis, United States· Withdrawn
Washington University School of Medicine
Verified postcode
St Louis, United States· Recruiting
Memorial Sloan Kettering Cancer Center
Verified postcode
New York, United States· Not yet recruiting
Lifespan
Verified postcode
Providence, United States· Completed
University of Utah
Verified postcode
Salt Lake City, United States· Completed
Mount Sinai
Verified postcode
Toronto, Canada· Recruiting
Global Gene Corporation
Verified postcode
Mumbai, India· Completed
Nagoya University Hospital
Verified postcode
Nagoya, Japan· Recruiting

Common questions

What is an MPNST?

MPNST stands for Malignant Peripheral Nerve Sheath Tumor. It's a rare type of cancer that grows in the protective covering of your nerves.

What is NF1?

NF1, or neurofibromatosis type 1, is a genetic condition that can sometimes increase the risk of developing certain tumors, including MPNSTs.

Will I receive any new treatments in this study?

No, this study is creating a database and collecting samples to understand MPNSTs better. It does not involve giving you any new medicines or treatments.

Will my personal information be kept private?

Yes, all your health information and samples will be handled with strict privacy and care, keeping your identity confidential.

Do I have to do anything extra if I join?

Mainly, you would give permission for researchers to access your medical records and to use any available tumor tissue. You won't generally need extra hospital visits just for this study.

How to find out more

Angela Hirbe, M.D., Ph.D.

hirbea@wustl.edu (314) 362-8965 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.