NC Registry

06/29/2026

05/25/2026

Today we mourn the loss of a fierce advocate, courageous fighter, and voice for so many impacted by NUT carcinoma. Her strength, compassion, and determination brought awareness, hope, and support to a community that continues to fight this devastating disease. Catherine’s impact will not be forgotten, and her legacy will continue to inspire all of us to keep pushing for awareness, research, and a cure. Sending love and prayers to her family, friends, and everyone whose lives she touched. 💜

View Catherine Burke Crews's obituary, send flowers and sign the guestbook.

03/24/2026

NUT Carcinoma- a rare & aggressive cancer -spreading hope and support to those who fight. . We raise our voices for those living with NUT carcinoma — a cancer so rare...

01/16/2026

It’s great to see NUT Carcinoma get the visibility it deserves. This was at Times Square in NYC

11/17/2023

There is a clinical trial combining a BET inhibitor, ZEN003694, with CDK inhibitor, abemaciclib, for adult and pediatric patients (Age >= 12) with NUT Carcinoma. Additional information about this trial can be found at the following link:
https://clinicaltrials.gov/study/NCT05372640

11/17/2023

There is a clinical trial utilizing a dual BET and CBP/p300 inhibitor in adult patients with targeted advanced solid tumors (including NUT Carcinoma). Additional information about this trial can be found at the following link:
https://clinicaltrials.gov/study/NCT05488548?term=NCT05488548&rank=1

07/04/2022

There is a clinical trial combining a BET inhibitor, ZEN003694, with chemotherapy treatment (etoposide and cisplatin) for adult and pediatric patients (12-17 Years) with NUT Carcinoma. Additional information about this trial can be found at the following link:

https://clinicaltrials.gov/ct2/show/NCT05019716?term=NCT05019716&draw=2&rank=1

12/22/2020

Two new testing sites are open for the clinical trial sponsored by Boehringer Ingelheim. US locations include:
Dana-Farber Cancer Institute in Boston, MA
Memorial Sloan-Kettering Cancer Center in New York, NY
Cleveland Clinic in Cleveland, OH
The University of Texas MD Anderson Cancer Center in Houston, TX

Click the link for more information:

BI 894999 First in Human Dose Finding Study in Advanced Malignancies - Full Text View.

05/04/2019

A clinical trial sponsored by Boehringer Ingelheim is currently enrolling NMC patients!!! Enrollment is open in the US at the MD Anderson Cancer Center in Houston, TX and DFCI in Boston, MA.

Please see the link below for more information:
https://clinicaltrials.gov/ct2/show/NCT02516553?cond=BI+894999