NUT Cancers: Help our researchers develop new treatments that offer hope!

NUT Cancers: Help our researchers develop new treatments that offer hope!

NUT cancers are rare, extremely aggressive cancers that generally have a poor prognosis. They are called “NUT” because they are linked to genetic abnormalities involving the NUTM1 gene. These cancers often affect the mediastinal tissues or the head and neck region, although they can develop in other parts of the body.

They can occur at any age but are more common in young adults and children (with an average age at diagnosis between 20 and 30 years).

The incidence of these cancers is estimated at a few hundred cases per year worldwide. However, these figures are approximate and may be underestimated, as this is a recently identified and previously underdiagnosed disease.

NUT cancers are characterized by rapid growth and a high propensity for metastatic spread, which explains their poor prognosis, with a median survival generally less than one year after diagnosis.

It is for these often very young patients that the teams at Gustave Roussy are stepping up their efforts.

There is an urgent need not only to improve the diagnosis of these cancers but also to better understand the biology of these tumors. There is an urgent need to offer these patients new, more effective treatments!

Through your donations, become a driving force for innovation and accelerate research that directly benefits patients!

Fighting NUT cancers: how your donations make a difference:

• Creation of an international registry of NUT tumors: NUT cancers are linked to specific molecular abnormalities, such as the NUTM1 gene fusion. Gustave Roussy has created an international registry to better identify these cases, understand the genetic mechanisms involved, and improve their management. This registry will centralize national clinical and biological data, enable the development of targeted therapies, and advance research.
• Creation of a database of biopsy samples dedicated to NUT cancers: Because they are very rare, NUT cancer samples are invaluable. Centralizing biopsies from patients diagnosed with NUT-type cancer in a single location creates a unique national—and even international—resource that is essential for research.  These tumor samples are used to analyze in detail the biology of NUT tumors, their specific genetic abnormalities (e.g., NUTM1 fusions), and epigenetic abnormalities. They will also facilitate the development by our teams of new preclinical research models (organoids, cell lines, PDX models).
• Assessment of circulating tumor cells (CTCs) in NUT patients: there is very little data on the role of CTCs in NUT cancers. However, CTCs provide tumor information from a simple blood sample. This is particularly useful in NUT cancers, which are often located in hard-to-reach areas (chest, head, and neck). The specific study of CTCs in NUT cancers allows for real-time monitoring of disease progression and guides treatment adjustments. CTC analysis could help identify other genetic and epigenetic alterations without the need for a new tissue biopsy.

There is an urgent need to implement molecular analyses to identify the genetic abnormalities that cause NUT cancers. These discoveries will pave the way for targeted therapies that are more precise and less toxic than conventional treatments. They also make it possible to monitor tumor progression and adapt treatments in real time. By better understanding the mechanisms at play in NUT cancers, the teams at Gustave Roussy will be able to develop new, more effective drugs. This is a key step toward more personalized and innovative medicine.

Thank you for your support

“Théo’s Fundraiser” was launched shortly after the death of our son Théo, who passed away at the age of 20 from NUT cancer, a rare and aggressive form of cancer. Thanks to an initiative by Edward Pujar and Maryse Ewange Epée, presidents of the Noisy-le-Grand Athletic Group where Théo trained, a sporting event—a charity run—was launched in 2016: the Théo Meeting. Since then, this event has been held annually as a symbolic ritual: a heartfelt tribute to Théo, but also a show of solidarity. All donations collected during the event are donated in full to the Gustave Roussy Institute to support Professor Besse’s research program on NUT cancers.

Théo Lecorgne’s Family

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“You are the driving force behind our research projects. NUT carcinomas remain a group of orphan tumors for which research could pave the way toward a better understanding of the disease and potentially identify new therapeutic targets.”

Maria Virginia Sanchez-Becerra, medical oncologist at Gustave Roussy

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To learn more:

• Protocol for the exceptional, temporary use of Birabresib in adult and pediatric patients with NUT carcinoma