ACCRF Research Update
April 2021
Understanding the Burden of ACC Through the Eyes of Patients
ACCRF is partnering with Memorial Sloan Kettering, Hadassah University Medical Center, and Ayala Pharmaceuticals to learn more from families impacted by adenoid cystic carcinoma (ACC) regarding disease burden and the impact of ACC on patients and family members. This information will help researchers understand better how the quality of life of ACC patients may be improved. The intention is to publish the findings to educate patients and researchers about ACC. We are inviting ACC patients to participate in this important study. The greatest need is for metastatic patients with tumor profiling reports.
 
What is required to participate?
  • You must be 18 years of age or older to participate.
  • You must be diagnosed with ACC to participate. You will be asked to provide a medical report (pathology, radiology or molecular profiling report) that ties your name to an ACC diagnosis.
  • You must participate in a 45-to-50-minute telephone interview conducted in English. No preparation is required but you should be at a computer with internet access at the time of the interview.
  • If you have a molecular profiling report of your tumor, you will be asked to provide the results.
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Will I be compensated?
  • After completion of the interview, you will be paid $100 by your choice of a check or an Amazon.com gift card.
 
How do I enroll?
  • Click here to enroll. Or copy and paste the following URL into your browser bar to access the RSVP: https://www.engagehealth.com/survey/LoginCode.aspx?PageNumber=1&SurveyID=72KHn622&Preview=true
  • At the screen, please check the box that says “Check if you have no code” to proceed to the RSVP
  • Fill in the RSVP/Survey and provide some times when you will be available for an interview. Someone from the Engage Health staff will contact you and confirm the date and time of your telephone interview.
 
Not everyone who fills out the survey will be interviewed as there are limited slots available and various patient situations that need to be represented. Currently, the greatest need is for metastatic patients with tumor profiling reports.
 
If you have questions or need help registering, please call Engage Health at (1) 651-994-0510.
 
Let your voice be heard while supporting research for the entire ACC community!
Newly Approved Research Grants
The ACCRF Scientific Advisory Board met in February to review recent research developments and to assess grant proposals. Two recommended proposals have received final approval by the ACCRF Board of Directors:
 
  • “Stereotactic Body Radiotherapy (SBRT) for Early Treatment of Oligometastatic Adenoid Cystic Carcinoma: The SOLAR trial” – Drs. Jonathan Schoenfeld and Glenn Hanna at the Dana Farber Cancer Institute (Boston, USA) will assess the use of radiation in ACC patients with fewer than 6 metastatic lesions. In some other cancer types, recent studies have shown a survival benefit from such treatments, so it will be important to learn whether that is the case in ACC.

  • “177Lu-PSMA Radioligand Therapy for Salivary Gland Cancer” – Dr. Carla van Herpen at Radboud University (Nijmegen, Netherlands) will expand her ongoing clinical trial to assess more ACC patients. The study uses an experimental therapy for prostate cancer that brings radiation particles to tumor cells with a particular cell surface protein. Most ACC cells have that same surface protein, perhaps allowing the therapy to be effective in ACC patients. 

ACCRF continues to solicit, receive and evaluate exciting research proposals. We will keep the ACC community posted on new grants as they are approved.
Clinical Trials
Clinical trials for ACC patients continue to be very active with more than a dozen studies recruiting. Along with the guidance of a knowledgeable physician, ACC patients may consider the clinical trials on ACCRF’s Open Studies webpage. For a review of the history of ACC clinical trials, please visit the Completed Studies webpage.
 
Since our last update in November, two new clinical trials have opened in China:
 
  • All-trans Retinoic Acid (ATRA) in the Treatment of Recurrent/Metastatic Adenoid Cystic Carcinoma of the Head and Neck (Aplus) - Shanghai Ninth People's Hospital (Shanghai, China) - Information link: https://clinicaltrials.gov/ct2/show/NCT04433169


The upcoming annual meetings of the American Association for Cancer Research (AACR) and the American Society of Clinical Oncology (ASCO) in April, May and June will include updates on many clinical trials, including those for ACC. We will report on those reports in future email updates.
Patient Meetings
The COVID pandemic continues to constrain the ability of the ACC patient community to meet in person in large groups. Unfortunately, ACCRF’s annual patient gathering will most likely be cancelled in 2021. However, we are planning to start videoconference “meetings” in the coming months. Stay tuned!
 
Meanwhile, our friends at Salivary Gland Cancer UK continue to host online events for patients. You may learn more at https://www.salivaryglandcancer.uk/get-involved/our-events/. The upcoming schedule for the rest of 2021 is as follows:
 
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