ACCRF Research Update - June 2026


For 20 years, ACCRF has been building a global network dedicated to advancing research and developing new, effective treatments for ACC. The American Society of Clinical Oncology (ASCO) annual meeting in Chicago remains crucial to these efforts.


A keystone event for all those invested in cancer research and treatment, the ASCO meeting brings together thousands of scientists, physicians, biopharma companies, and patient advocates from around the world to share the very latest data in cancer research and treatment. With much of this data being shared publicly for the first time at ASCO, the meeting is an invaluable barometer of the current state of cancer research, and work presented there can transform treatment options and standards of care. 

Both ASCO 2025 and 2026 were notable for their headline-making results from clinical trials open to ACC patients showing some of the best-ever results. Combined with an increased visibility of ACC and the research from our grantees, momentum towards finding a cure has never been stronger.


The work that brought us to this moment is founded upon ACCRF’s three core pillars of action: connect, educate, and support. By focusing on these areas of impact, we continue to expand our network and raise the profile of ACC at ASCO and around the world.


To learn more about ACCRF at ASCO and highlights from this year's meeting, you can read the full feature on our website.

Above: Co-Founder and Board Chair Jeff Kaufman and Executive Director Dr. Nicole Spardy Burr at grantee Dr. Bhumsuk Keam's ASCO presentation

2026 Patient Meetings

Thank you to everyone who attended our spring Patient Meetings this year! Your presence, participation, and positive energy filled both events with camaraderie and hope. 


Held in Needham, MA and Chicago, IL, both meetings offered patients and their loved ones an opportunity to connect, share their stories, and discuss the latest in research and treatment options. These meetings continue to be vital in building and expanding the ACC community.


If you are interested in hosting or facilitating a future meeting, please contact us at info@accrf.org.


We hope to see you at the next ACCRF Patient Meeting!


Top: ACCRF Patient Meeting 2026 - Needham attendees; Immediately above: ACCRF Patient Meeting 2026 - Chicago attendees

Webinar 10: “Systemic Therapies in ACC” is Now Available

Our latest ACCRF Patient Webinar: Systemic Therapies in Adenoid Cystic Carcinoma (ACC) with ACCRF grantee Dr. Glenn Hanna (Dana Farber Cancer Institute) is now available on our YouTube channel.


In this webinar, Dr. Hannah reviews systemic therapies for ACC patients, including novel drugs currently being studied in clinical trials as well as therapies previously explored in ACC trials that may be available off-label. He also introduces tumor profiling, explaining when tumor testing may be beneficial and the different types of tests available.Throughout the webinar, Dr. Hanna discusses how he works collaboratively with patients to find the treatment that best fits their needs and shares insights that may help ACC patients work with their doctors to make informed decisions about next step treatment options.


You can find the recording through the button below, along with all previous webinars in our Patient Webinar Archive.

Research Updates

We are proud to support many oncologists in their ongoing work seeking 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 been opened or are recruiting:


  • REM-422: The confirmatory cohort of this open-label, phase 1/2 study of REM-422, a MYB mRNA Degrader, has recently opened study sites in France. 





  •  LNCB74-01: This open-label, phase 1, dose escalation and dose expansion study to determine safety and tolerability Next Cure’s B7-H4 antibody drug conjugate (ADC) is now recruiting patients across multiple US sites. This study may be appropriate for ACC-I patients with advanced disease. 



Published Articles



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


  • Axitinib plus Avelumab in Recurrent/Metastatic Adenoid Cystic Carcinoma: Biomarker Analysis and Updated Results of the Phase II Trial: Grantees Drs. Ferrarotto, El-Naggar, Mitani, Hoff and de Sousa report updated outcomes for the Phase 2 clinical trial testing Axitinib (VEGFR inhibitor) plus Avelumab (PD-L1 antibody) in advanced ACC patients. Their findings show that patients with ACC-II had longer disease control (11.4 months) compared with ACC-I (1.8 months). The team also identified a 167-gene immune “fingerprint” that predicted which patients benefited from immunotherapy. These findings may help guide who is most likely to benefit from immunotherapy-based treatments in ACC; it also represents the first study to describe clinical outcomes by ACC subtype.


  • Amivantamab for Recurrent or Metastatic Adenoid Cystic Carcinoma: A Phase 2 Nonrandomized Clinical Trial:  Grantee Dr. Hanna reports on the results of a Phase 2 clinical trial testing a bispecific antibody targeting EGFR and MET in advanced ACC patients. Of the 18 evaluable patients, one ACC patient (ACC-I with a EGFR mutation) experienced tumor shrinkage by 30% or more. Twelve patients (67%) experienced stable disease while taking the drug. Common side effects included skin- and infusion-related reactions, and fatigue.




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 grants:

Renata Ferrarotto - MD Anderson Cancer Center: Development of ex-vivo assays for ACC drug development 


Renata Ferrarotto - MD Anderson Cancer Center: Characterization of the surfaceome in ACC tumors



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

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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