ACCRF Fall Update

ACCRF Update - November 2025

Research Breakthroughs: The Story of MYB

Over the past 20 years, ACCRF has led a major research effort to develop our basic understanding of ACC’s biology, identify key drivers of the disease, support the development of therapies targeting those drivers, and bring new treatments to patients through clinical trials.

One of the biggest breakthroughs was discovering that a single gene, MYB, drives most cases of ACC. Scientists already knew that MYB played a role in some blood and colon cancers, but finding that most ACC tumors have high levels of MYB was a watershed—it revealed how ACC develops and opened new paths toward treatment.

In our latest feature, we explore the process by which the ACCRF research community came to identify and understand MYB, and how that understanding was transformed into new potential treatments for ACC patients.

Read the full feature on our website to learn more about this incredible journey and the many individuals –including ACCRF grantees Drs. Goran Stenman, Adel El-Naggar, Andy Futreal, Scott Ness, Brad Bernstein, Birgit Knoechel, Christopher Moskaluk, and Alan Ho–who made it possible.

Read the Full Feature Here

The Latest Patient Webinar is Now Available!

The latest ACCRF Patient Webinar is now available on our YouTube channel!

Watch Here

Webinar 9: Antibody Drug Conjugates (ADCs) and Current Open Clinical Trials with Jeffrey Kaufman and Dr. Nicole Spardy Burr explores recent developments in novel ACC treatments as well as the landscape of clinical trials available to patients both in the U.S. and globally.

Thank you to everyone who joined us for the live webinar on October 11 and whose presence and excellent questions helped to make for an engaging and informative discussion.

As always, you can watch all previous webinars in our Patient Webinar Archive.

2025 ACCRF Research Conference

This September, the biennial ACCRF Research Conference in Boston brought together nearly 70 members of the global ACC research community for two days of presentations, discussions, and collaboration, all focused on advancing new treatments and a cure. These dedicated individuals shared their latest work in basic, translational, and clinical ACC research, including new potential biomarkers for diagnosis and treatment, as well as early results from projects developing new treatment ideas for patients. We are incredibly grateful to all those who shared the latest in ACC research and treatment and to everyone who contributed their expertise to the fruitful dialogue.

ACCRF is dedicated to supporting such brilliant and committed individuals who every day advance understanding and treatments for ACC, and continue to provide hope to patients around the world.

Explore the Full Conference Agenda

Research Updates

We are proud to support many oncologists in their ongoing work towards new treatments and a cure for ACC. The ACCRF research network continues to facilitate cutting-edge research and clinical trials that advance our understanding of the disease. Below are the latest updates in clinical trials, research publications from ACCRF grantees, and ACCRF-funded research grants.

Clinical Trial Updates

ACCRF’s Open Studies webpage lists clinical trials that may be appropriate for ACC patients after consulting their physicians. Listed studies below reflect any changes made since the previous email update.

Studies that have recently opened or begun enrolling patients:

PRONTO (proton radiation therapy for parotid ACC): Adjuvant Proton Beam Therapy in Patients With Parotid Carcinoma. This trial is open in the UK and enrolling patients with ACC of the parotid.

Studies that have recently reported preliminary results:

REM-422: Remix Therapeutics Announces Positive Preliminary Data from Phase 1 Study of REM-422 in Patients with Adenoid Cystic Carcinoma at the 2025 AACR-NCI-EORTC International Conference on Molecular Targets and Cancer Therapeutics

Published Articles

Below are the latest in research publications from ACCRF grantees. You can find these and many others on our Published Articles webpage.

Spatially Resolved Molecular Investigation of Perineural Invasion in Lacrimal Gland Adenoid Cystic Carcinoma: ACCRF grantee Dr. Daniel Pelaez studied the tumor microenvironment of lacrimal gland ACC and nearby perineural invasion, discovering a potential biomarker and target.

Elraglusib, a glycogen synthase kinase-3β (GSK-3β) inhibitor, plus chemotherapy with or without immunotherapy in patients with recurrent, metastatic salivary gland carcinoma: ACCRF grantee Dr. Glenn Hanna and ACCRF scientific advisor Robert Haddad published on salivary gland cancer patients treated with Elraglusib. Unfortunately, none of the 15 ACC patients had a partial response.

Cell-free DNA as a complementary marker of therapeutic futility in adenoid cystic carcinoma: ACCRF grantees Drs. Lohr, Knoechel, and Hanna published a study showing that circulating tumor DNA (ctDNA) can be detected in the blood of patients with advanced ACC. Their findings suggest that liquid biopsies looking for ctDNA may be a valuable new tool to track tumor growth and treatment response in ACC patients when used alongside standard imaging methods such as CT, PET or MRI scans.

Disease-specific and overall survival for patients with lacrimal gland adenoid cystic carcinoma in recent decades: ACCRF grantees Drs. Bita Esmaeli and Renata Ferrarotto described the clinical course of 52 treated ACC patients with lacrimal tumors.

Research Grants Awarded by ACCRF

ACCRF is dedicated to the pursuit and support of the most promising ACC research in the field today. Since founding ACCRF, we have awarded more than $20 million in research grants to individuals working towards new treatments and a cure, rapidly expanding the field of ACC research in the process.

We are proud to have recently awarded the following grant:

Dr. A. John Iafrate (Massachusetts General Brigham): Investigating the immune microenvironment of Adenoid Cystic Carcinomas: a novel therapeutic approach by reversing HLA/B2M downregulation.

For a full list of ACC research grants funded by ACCRF, visit our Funded Grants page.

Event Updates

Congratulations to Head Strong Voices for Healing for hosting their first-ever walk-a-thon in support of ACCRF! On Saturday, September 20th, walkers and runners gathered in Chicago for a day of community and connection to benefit ACC patients, raising $3,000 dollars for ACC research. Head Strong Voices for Healing is dedicated to raising awareness, supporting patients, and funding research of head and neck cancers, and we are truly thankful for their hard work and generosity in creating such a successful and joyful event!

ACC Physicians List

ACCRF is pleased to provide the ACC Physicians List, containing up-to-date information for over 850 physicians globally with experience treating ACC.

This fully searchable database allows patients to locate physicians by name, location, institution, or field of expertise to help inform their decisions in selecting doctors. Features include a link to each doctor’s institutional website (where available) and a link to the National Physicians Index (NPI) listing for each doctor based in the USA which provides current information on practice locations and status.

This list is constantly evolving, and we rely on patient input to ensure that our database is as comprehensive and current as possible.

Please email us at info@accrf.org if any of the following apply:

You feel your doctor is knowledgeable about ACC and should be added to the list
Your doctor on the list has retired
Your doctor on the list has moved away from where s/he is listed

Your guidance will ease the path for future ACC patients. We are particularly interested in countries and regions with relatively few available physicians listed.

We encourage patients with advanced, metastatic, or complex cases of ACC to visit our Second Opinions Resource for more information on specialists.

ACCRF’s work is only possible through the generous support of community members like you. With increased uncertainty in the research funding landscape, our efforts to discover new, better treatments for ACC are more critical than ever. Please give today and help us continue to advance groundbreaking research that directly impacts the lives of patients.

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