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ACCRF Update

February 2023

ACCRF Patient Webinar #4: Dealing with ACC Lung Metastases

In 2021, ACCRF initiated a series of webinars to educate the ACC patient community about ACC and its treatment options. The first webinar provided an overview of ACC research; the second covered systemic therapy; and the third dealt with primary tumors. Recordings of all three webinars are available in our Patient Webinar Archive.


The fourth patient webinar will take place on March 4, 2023 at 11 AM to 12 PM EST (16:00 to 17:00 UTC/GMT). The topic will be "Dealing with ACC Lung Metastases", featuring two clinicians with extensive experience in treating ACC patients. Dr. Renata Ferrarotto (medical oncologist at the MD Anderson Cancer Center) and Dr. Jonathan Schoenfeld (radiation oncologist at the Dana-Farber Cancer Institute) will answer questions on diagnosis, treatment and monitoring of ACC lung metastatases. Register and submit your questions here

REGISTER

ACCRF Executive Director Addresses 4th Sino-US Symposium on Adenoid Cystic Carcinoma

On December 3, 2022, the 4th Sino-US Symposium on Adenoid Cystic Carcinoma took place in Shanghai, China. Organized by Dr. Guopei Zhu and his colleagues at the Shanghai Ninth People's Hospital, the symposium covered a wide array of research topics, ranging from basic and translational science through to clinical research. The full agenda is available here.


ACCRF Executive Director Jeff Kaufman presented on "Global Efforts in Basic and Translational Research for ACC". He reviewed what is known scientifically about ACC and described some of the more encouraging recent developments that may eventually lead to better therapeutic options for ACC patients. The video is available here.

Clinical Trial Updates
Physicians

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 since our last update in October.


One study recently started enrolling ACC patients:


  • KB-0742 – This study is testing an inhibitor of CDK9. It is open in Boston, MA, Duarte, CA, and San Antonio, TX, USA.


One study recently completed its enrollment:


  • P-PSMA-101 CAR-T - This study of autologous T cell therapy is no longer being developed by Poseida Therapeutics. It is possible that an allogeneic T cell therapy will be developed in the future which may be appropriate for ACC patients.


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

New Research Articles on Treatment Options

As the number of clinical trials and potential treatments for ACC patients has grown, medical oncologists are becoming more active in documenting their approaches to taking care of their patients. In 2021, the American Society of Clinical Oncology (ASCO) published its clinical guidelines for salivary gland cancer patients, including ACC. And at the end of 2022, the European Society for Medical Oncology (ESMO) published its similar clinical guidelines. There are some interesting divergences that we will explore in future communications. However, we also wish to highlight the journal articles (with ACCRF grantee authors in parentheses) that focus more narrowly on ACC alone, and which patients may find interesting:



These and other important research papers are all listed on our Published Articles webpage.

San Diego Charity Volleyball Tournament

On October 22, 2022, a band of happy, sandy and loud volleyball players converged onto the beach in San Diego, CA, USA, for a charitable competition in support of ACCRF. By all accounts, this 11th annual SDCVT event was a spectacular success!

SDCVT chose to support ACCRF due to the advocacy of Clarissa Nakaima whose mother Cielo passed away from ACC in 2022 after 18 years of managing the disease. Skyler Kaufman, the son of ACCRF co-founders Marnie and Jeff Kaufman, won the tournament which raised $2,500 for the foundation.

ACC Physicians List

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.

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