The ACCRF Board of Directors consists of ACC patients or their family members who provide strategic guidance to the foundation's staff. Directors volunteer their legal, accounting, marketing, medical, financial, managerial, communications and public affairs expertise to help the foundation pursue its mission. Along with the Scientific Advisory Board, the Board of Directors is an essential component of the foundation's leadership. ACCRF is very pleased to welcome two very energetic and positive members to the Board of Directors.

Clinical trial activity remains high for ACC patients dealing with recurrent or metastatic disease that is progressing. ACCRF provides a list of clinical trials on the Open Studies webpage that may be appropriate for ACC patients to consider in consultation with their oncologists. In addition, the Completed Studies webpage reviews the history of systemic therapy (drugs) in ACC. Here we review some of the more recent developments in clinical trials.

Studies that recently opened, restarted or expanded recruitment:

• CAB-AXL-ADC BA 3001 – This study is testing an antibody drug conjugate against AXL, a molecular target identified in a recent publication on ACC (link here). It is open at MD Anderson (Houston, TX, USA).
• Amivantimab – This study of an antibody against EGFR and MET is now open at the University of Cincinnati (Cincinnati, OH, USA).
• ONC-392 - This study is testing an immune checkpoint inhibitor of CTLA-4. It is open at many sites across the USA and Australia (see the list at the end of the study description). 
• Stereotactic Body Radiation Therapy (SBRT) for Early Treatment of Oligometastatic ACC - This study for ACC patients with up to 5 metastases is open at the Dana Farber Cancer Institute (Boston, MA, USA) and recently opened at UCSF (San Francisco, CA, USA). Additional sites at the University of Chicago (Chicago, IL, USA) and the Mayo Clinic (Rochester, MN, USA) are pending.
• Implantable Microdevice for Drug Screening - This new study is not a therapeutic trial. It is a research study of a device implanted in the tumors of ACC patients preparing for surgery who have not had any prior drug treatment. The device tests micro-doses of an array of drugs. The study recently opened at the Dana Farber Cancer Institute (Boston, MA, USA).

Studies that completed their enrollment:

• Lenvatinib and Pembrolizumab - This phase II study completed enrollment at Memorial Sloan Kettering (New York, NY, USA).
• CV8102 - This study is no longer recruiting for unresectable patients across various European sites. 

We will continue to update patients about new and closing studies as we learn about them. 

Cancer research is often siloed with each institution guarding its own resources. The ACCRF research network, however, is famously collaborative, working across countries, academic institutions and companies to understand the biology of ACC and how to treat it. In recent months, two published articles demonstrate the power of collaboration:

• Researchers at MD Anderson (Renata Ferrarotto), the University of Chicago (Evgeny Izumchenko, Nishant Agarwal and Alex Pearson), Brigham & Women's Hospital (Jon Aster), and Ayala Pharmaceuticals published an article showing anti-tumor activity of the NOTCH inhibitor AL101 in NOTCH-mutant ACC models (link here). This collection of research talent relied upon ACCRF for grant funding and our preclinical screening platform that generated some data for the article.

• Researchers at the University of Gothenburg (Göran Stenman), the University of Virginia (Christopher Moskaluk and Henry Frierson) and MD Anderson (Yoshitsugu Mitani, Renata Ferrarotto and Adel El-Naggar) published on MYB and MYBL1 status and their clinical significance across 400 cases of ACC (link here). Their work identifies MYB or MYBL1 alterations in 78% of cases, overexpression of MYB or MYBL1 in 93% of cases and loss of the 3’-part of MYB as a prognostic biomarker for poor overall survival. This publication represents one of the largest multi-institutional ACC studies, authored by ACCRF grantees spanning three academic centers.

Do you have a passion for helping and educating patients? Are you able to write about medical and scientific issues for non-experts? Have you had any development experience?

If so, please consider applying for ACCRF's new position as a Development and Communications Officer. Learn more here.

Choosing the right doctor is a crucial decision. However, finding doctors experienced in treating ACC can be challenging. In order to help ACC patients make an informed decision in selecting doctors, ACCRF offers an ACC Physicians List of doctors who have treated ACC patients.

We are always looking to improve the list! 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.

Sign up with ACCRF on AmazonSmile and 0.5% of your purchases will be donated to ACC research. It costs you nothing and keeps the research flowing. Find out more when you click here. Enter "Adenoid Cystic Carcinoma Research Foundation" when asked to select a charitable organization.