ACCRF Update

ACCRF Update - August 2024

Honoring Dr. Scott Ness' Contributions to ACC Research

A pioneer in cancer research for over 30 years, Dr. Scott Ness’ work has significantly expanded our understanding of ACC and provided key insight into the biological mechanisms that drive the disease.

Since 2011 Dr. Ness has been a five-time ACCRF grantee, building on his groundbreaking work in leukemia to advance the field of ACC research. Most crucially, he identified the role of genomic alterations in the MYBL1 gene in ACC, a watershed in how we understand the disease and its potential treatments.

Dr. Ness has also been instrumental in building partnerships among ACC researchers, hosting a MYB-focused research conference and facilitating collaborations across multiple institutions.

These efforts continue to be essential to the ongoing ACC research landscape and have been invaluable in our search for new treatments and a cure.

On behalf of the ACC research and patient communities, we extend our sincerest gratitude to Dr. Ness for his breakthrough efforts in the field of cancer research that have made so much of our ongoing work possible.

You can learn more about Dr. Ness and all of ACCRF's Research Champions here.

ACC Physicians List - International Update

ACCRF is pleased to announce that the ACC Physicians List has been fully updated with current information for nearly 250 international physicians with experience treating ACC practicing outside the United States. The list now contains up-to-date information for over 850 physicians globally.

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. New 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.

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 with their physicians. Listed studies reflect any changes made since the previous email update.

Studies that have recently been closed or paused:

OBT-076: this study of a CD205 ADC is no longer enrolling ACC patients.

Recently Published Articles

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

Intratumoral microbiome of adenoid cystic carcinomas and comparison with other head and neck cancers: ACCRF grantees Drs. Karpinets, Mitani, Ferrarotto, Futreal, and El-Naggar publish their findings that specific bacteria strains found within ACC tumors are linked to prognosis. Researchers sequenced bacteria strains found in ACC tumors and report specific "oral-like" bacterial strains and more varied bacteria within a tumor correlated with better prognosis, whereas specific "gut-like" bacterial strains and a less varied bacteria correlated with poorer prognosis. More work is required to determine whether and how specific bacterial strains impact tumor cell biology and their prognostic value in ACC.

Molecular characterization of the salivary adenoid cystic carcinoma immune landscape by anatomic subsites: ACCRF grantees Drs. Amelio, Yarbrough and Ferrarotto highlight immunological differences across ACCs of the major and minor glands. This research shows that ACCs originating at different salivary gland sites may have differences in certain signalling pathways and the types of immune cells found in their microenvironment. More work is needed to determine whether these differences impact a patient’s prognosis or response to radiation.

Establishment and characterization of cMYB-expressing human salivary adenoid cystic carcinoma cell lines and matching patient-derived xenograft model: ACCRF grantees Drs. Nor, Castilho, and Warner develop two cell lines and one patient-derived xenograft model from ACC tumor samples. Cell lines are tumor cells grown on plastic dishes that can be used to quickly assess how anti-cancer drugs affect a cancer cell's growth and survival. Patient-derived xenograft models are tumor tissue grown in mice and have the advantage of assessing how anti-cancer drugs affect tumor cell health in the context of an entire organism. Both are important tools for researchers to determine whether a specific anti-cancer drug might make sense to test in ACC patients.

Vascular Endothelial Growth Factor Receptor Inhibitors for Recurrent or Metastatic Adenoid Cystic Carcinoma: A Systematic Review and Meta-Analysis: ACCRF grantees Drs. Ferrarotto and Hoff review the use of VEGFR inhibitors in ACC. Researchers reviewed 17 studies describing recurrent/metastatic ACC patients treated with various VEGFR inhibitors (e.g. Lenvatinib, Axitinib, Rivoceranib, etc.). Across these studies, stable disease was most frequently described as the best overall response (82%), and the 6-month disease control rate was 54%. Lenvatinib and Axitinib (out of the 10 VEGFR inhibitors explored) were associated with the best anti-tumor responses and tolerability profiles.

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. Liron Bar-Peled - Massachusetts General Hospital Cancer Center -Pilot grant to study chemical proteomics to target MYB in ACC

Congratulations to ACCRF grantee Dr. Renata Ferrarotto on receiving an R01 Grant from the National Institutes of Health (NIH):

Dr. Renata Ferrarotto - MD Anderson Cancer Center - R01 grant to advance ongoing research on biomarkers for prognosis and treatment of ACC.

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

Upcoming Events

7th Annual Brave Like Gabe 5K

This year's annual Brave Like Gabe 5k will be held Saturday, September 28 in St. Paul, MN and at satellite locations across the country, raising funds and awareness for ACC research.

If you are interested in hosting a satellite 5k you can contact the BLG foundation and learn more about the event at https://www.bravelikegabe.org/

ACCRF is proud to continue our ongoing partnership with this wonderful organization.

We hope you will be able to join us this year for another great 5k!

Call for Patient Meeting Participants: Ann Arbor, Michigan

If you are interested in traveling to Ann Arbor and attending an ACCRF Patient Meeting, we want to hear from you!

We are currently gauging interest in a potential Patient Meeting on Saturday, October 12 featuring our Director of Research, Nicole Spardy-Burr, and potentially a medical oncologist with experience in treating ACC patients.

Please contact us by September 12 if you would be willing and able to participate. If there is significant interest, we will reach out with additional event details.

Save the Date: Fall Webinar 2024

Please join us Saturday October 26 at 12pm ET for our next Patient Webinar. Our Webinar series invites researchers and clinicians to share their expertise and insight into various aspects of ACC and its treatments. A formal invitation with topics of discussion will follow.

As always, you can view all past webinars in our Patient Webinar Archive.

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