ACCRF Fall Update - November 2023

Honoring the Jacobs' Visionary Leadership

Irwin and Joan Jacobs have been tireless and visionary leaders in ACCRF’s effort to find a cure. Since 2007 they have advanced ACC research through their remarkable generosity as well as their efforts in bringing together leading cancer researchers with two ACCRF Scientific Forums. Their work has touched thousands of lives including ACC patients, advocates, researchers, and oncologists, and their impact on ACCRF cannot be overstated. You can learn more about the Jacobs' remarkable work with ACCRF here.


We are incredibly proud to call them our friends and allies in the fight for a cure.


Thank you Irwin and Joan!

Recap: Patient Webinar - ACC Research Updates

Thank you to everyone who attended our 5th ACCRF Patient Webinar: ACC Research Updates with Executive Director Jeffrey Kaufman and Director of Research Nicole Spardy Burr, PhD. We are so grateful to all those who helped make this one of our most well-attended virtual events ever!


If you were unable to attend or you would like to rewatch or share the webinar, you can find the recording here along with previous webinars in our Patient Webinar Archive.

Research Updates

Clinical Trial 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. ACCRF’s Open Studies webpage lists clinical trials that may be appropriate for ACC patients after consulting with their physicians.


Studies that recently opened, restarted, or expanded recruitment:


  • Sacituzumab Govitecan (Trodelvy): This study is testing an antibody drug conjugate against TROP2, a molecular target identified in a recent poster. It is open at MD Anderson (Houston, TX, USA). 
  • LCB84 and anti-PD-1 monoclonal antibody: Thistudy is testing a different antibody drug conjugate against TROP2 alone and in combination with an anti-PD-1 monoclonal antibody. This trial is open at the Dana Farber Cancer Institute (Boston, MA, USA), Mary Crowley Cancer Research Center (Dallas, TX, USA) and MD Anderson (Houston, TX, USA). 
  • SGN-B7H4 ADC: This study is testing an antibody drug conjugate against B7-H4, a molecular target identified in a recent publication on ACC (here and here). It is open at MD Anderson (Houston, TX, USA). 
  • CB103 and Lenvatinib: This study is testing a NOTCH inhibitor combined with a VEGFR tyrosine kinase inhibitor. It is open at the Dana Farber Cancer Institute (Boston, MA, USA).


Studies that completed their enrollment:


  • Lutetium-177-PSMA Radioligand Therapy: The ACC cohort of this phase II study completed enrollment at Radboud Medical Center. Preliminary results were published in a recent poster .
  • ONC-392: This study has stopped enrolling ACC patients.


Studies with results that have been recently published:


  • Nivolumab and Ipilimumab: This phase II study testing a PD-1 inhibitor in combination with a CTLA-4 inhibitor in 32 ACC patients recently published its results (6% partial response, 47% stable disease, 5 months median progression free survival).
  • Rivoceranib/Apatinib: This phase II study testing a VEGFR2 inhibitor in 72 ACC patients recently published their results (10% partial responses, 81% with stable disease > 6 months, 9 months median progression free survival and 25.3 months median overall survival). 
  • CB103: This phase I/II study testing a pan-NOTCH inhibitor in 40 ACC patients recently published their results (0% partial responses, 18.6% with stable disease > 6 months, 6.2% with stable disease > 12 months, 2.5 months median progression free survival and 18.4 months median overall survival).
  • MK-2206: This phase II study testing an AKT inhibitor in 14 evaluable ACC patients recently published its results (0% partial responses, 9.7 months median progression free survival and 18.0 months median overall survival).


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

Events

Save the Date: Patient Meeting 2024


Please Join us Saturday March 2, 2024, 11am-3pm, ET for our next Patient Meeting in Boston, MA. The Patient Meeting will be a forum for ACC patients to meet, to discuss their journeys and experiences with ACC, and to hear from leading oncologists and researchers about the latest research updates. A formal invitation will follow. We hope you will be able to join us!

6th Annual Brave Like Gabe 5K


On Saturday September 9, 2023 hundreds of people came together in St. Paul, MN and cities across the country to raise money for ACC research by running in the 6th Annual Brave Like Gabe 5k. ACCRF was proud to once again partner with Brave Like Gabe to support the critical work of finding effective treatments and a cure for ACC.


In total the Brave Like Gabe 5k raised over $65,000 in support of ACCRF's research efforts. We are so grateful to the Brave Like Gabe team and to everyone who participated in this year's event for helping to advance the field of ACC research and serve our patient community. We can't wait to see everyone at next year's race!

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.


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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