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ACCRF Update
May 2019

Patient Champions: Ella Pinney and Family

A young mother diagnosed with ACC might be forgiven for blocking out the world and focusing on only her immediate family. British patient Ella Pinney refused to shrink within her own world. Instead, while chasing around an energetic toddler, Ella decided to push on multiple fronts to raise awareness and funds for ACC research. Remarkably, and with the support of her loving family, Ella already has raised more than $500,000 for ACCRF and is lining up additional industry support for a major ACC research effort at the University of Manchester. To learn more about this inspiring story, click  here .
Research Conferences: 
Shanghai and Boston
An energetic ACC patient community is inspiring a global ACC research community! Two recent scientific conferences demonstrated how ACC researchers are understanding the disease better and, therefore, are developing better treatments.

On December 1, 2018, in Shanghai, China, ACC patients and clinicians gathered for a major ACC event. In the morning, more than 50 ACC patients attended a   large-scale clinic in which they consulted with experts from the Shanghai Ninth People's Hospital affiliated with the Shanghai Jiao Tong University School of Medicine. Later, in the afternoon, 50 physicians and researchers met to hear scientific presentations and discussions, including a video lecture by ACCRF Executive Director Jeff Kaufman. More than 1,700 viewers watched the live webcast. The remarkable day was organized by Drs. Chenping Zhang and Guopei Zhu, both of whom were instrumental in orchestrating the recent promising clinical trial of the novel drug Apatinib.

On March 15 and 16, 2019, in Boston, MA, USA, scientists gathered for the "Advances in ACC Translational Research" conference. Hosted by Drs. Derrick Lin, Lori Wirth and Sara Pai of the Massachusetts Eye & Ear Infirmary and Massachusetts General Hospital, the event brought together more than 70 attendees from Australia, China, the United Kingdom and the United States to hear presentations on the newest preclinical models, genomic studies, treatment concepts and clinical trials. ACCRF co-sponsored the event. The program for the conference is available here.
Clinical Trials Update

ACC patients and their physicians may review prior clinical trial results on ACCRF's Past Studies webpage. And they may monitor open clinical trials on the Current Studies webpage. Two of the most recent developments are summarized below:
  • A phase II study of Cabozantinib recently opened for salivary gland cancer patients, including a separate cohort for ACC patients. The clinical trial is being run by Dr. Carla van Herpen at the Radboud UMC in Nijmegen, Netherlands. Cabozantinib is a drug approved for thyroid and kidney cancers that targets c-MET, VEGFR, AXL and RET proteins, some of which are expressed highly in many ACC tumors.
  • A phase II study of AL101 recently expanded the number of sites open in Canada and the USA for ACC patients with activating NOTCH mutations determined by tumor profiling. Only about 25% of ACC patients with recurrent/metastatic disease have activating NOTCH mutations, but they tend to have more aggressive disease with liver and bone metastases.
At ACCRF, we estimate that at least another 7 clinical trials will open for ACC patients within the coming year across Asia, Europe and the USA. And each of these trials has a reasonable scientific rationale for why they should work in ACC, supportive drug screening data in ACC preclinical models and/or promising clinical signals in ACC patients. Recent results have shown some higher response rates in ACC patients, and this promising next wave of clinical trials may well continue the trend.
Tumor Donations
In order to speed the discovery of improved therapies, ACC patients with an upcoming surgery may consider donating part of their tumors for research. It is free, will not interfere with your treatment, and maintains your privacy.  So ask your surgeon about tumor donations and complete the appropriate consent forms prior to surgery. 

Several academic medical centers have active ACC research programs that freeze and maintain large biorepositories of tumor specimens. These banked specimens may be used to create research models of ACC (cell cultures and mouse models), undertake sophisticated genomic studies and/or determine relationships between tumor profiles and treatment outcomes. Typically, the surgeons at these leading cancer centers will approach patients prior to surgery for consent to bank and analyze their tumors.

For patients undergoing surgery at an institution that does not have an active ACC biobanking effort, there are two alternatives for getting your tumor from the operating room to researchers working on ACC.

(1)  (for patients in the United States)
(2) Manchester Cancer Research Centre Biobank (for patients in the United Kingdom)

By choosing one of these options, your tumor donation will help to drive the science that fuels new therapies for ACC patients.
For further details, please visit our 
Tumor Donations webpage.

ACC Physicians List

Choosing the right doctor is a crucial decision. However, finding doctors experienced in treating adenoid cystic carcinoma (ACC) can be a challenge. In order to help ACC patients make an informed decision in selecting doctors, the Adenoid Cystic Carcinoma Research Foundation (ACCRF) and the Adenoid Cystic Carcinoma Organization International (ACCOI) offer a listing of physicians who have treated ACC patients.
The ACC Physicians List was recently updated with recommendations from other ACC patients. You may access it on our
Find a Physician webpage.
If your physician is knowledgeable about ACC and is not included on the list, please email us at with your recommendation. Your guidance could ease the path for future ACC patients. We are particularly interested in cities, regions and countries with relatively few available physicians listed.
Please Help Support ACC Research