ACCRF Logo Website
ACCRF Update


Clinical Trials - Past and Current
ACC patients with widespread and growing tumors often consider trying systemic therapy (targeted drugs, immunotherapy or chemotherapy). Given that no systemic therapy has been approved for treating ACC, progressing patients frequently consult with their physicians and discuss clinical trials.

There has been a recent surge in clinical trial activity for ACC patients. The results from several clinical trials completed in 2016 (axitinib, BBI503, pazopanib and regorafenib) have been updated in our Past Studies webpage. In reviewing the history of ACC clinical trials, we group drugs according to their molecular targets and we highlight certain drugs that appear to be more active in ACC. 
Four new ACC clinical trials are listed on our Current Studies webpage. Studies of lenvatinib are now open in both New York and Milan. A new study of axitinib recently opened in Seoul. And the first clinical trial of ACC patients in China opened in Shanghai to study Apatinib. All of these drugs  are "multi-kinase inhibitors", a class of drugs that has been moderately effective in a subset of progressing ACC patients in the past (see Past Studies for more information). Studies of four drugs --  eribulin, nintedanib, pazopanib and regorafenib --  recently completed enrollment and are no longer recruiting ACC patients.
In addition to the first table of clinical trials recruiting ACC or salivary gland cancer patients (usually phase II studies), we now list three additional tables of studies for drugs that inhibit molecular targets suspected of contributing to tumor growth in all or some ACC patients:  
  • Phase I studies of targeted drugs that may be of interest to all ACC patients
  • Phase I studies of drugs targeting the NOTCH pathway (only for patients with NOTCH-activated tumors)
  • "Basket trials" that incorporate tumor profiling into drug selection
Patients should consult with a knowledgeable physician when considering systemic therapy and clinical trials. For those seeking a nearby medical oncologist, our Physicians List may be helpful.

Grantee Publications
ACCRF's network of brilliant researchers continues to publish new findings about ACC. Of particular note is a recent article by Drs. Jonathan Schoenfeld and Glenn Dranoff on the relationship of ACC tumors with the immune system. Their findings have guided the design of forthcoming ACC clinical trials of immunotherapy. Dr. Dranoff, a leading expert on the immune system, now directs immuno-oncology research at Novartis Pharmaceuticals, a major drug developer.
Selected articles written by ACCRF grantees are available at our Published Papers webpage.

Champions in the Community
The ACC patient community is a diverse, active and caring group of individuals leading fulfilling lives. We recently updated our Picture Gallery to show how wonderful and resilient these patients can be. Our new Patient Champions webpage highlights just some of the amazing survivors and their loved ones who are making a difference for everyone. And, on our Research Champions webpage, we will be expanding our salutes to ACC researchers working to bring better treatments and a cure to patients.
Thanks to everyone for helping build this beautiful and powerful community!

Patient Events Around the World
The families of twenty ACC patients enjoyed two beautiful spring days in Boston, Massachusetts, USA during May 14th and 15th. First, they celebrated at the Friends of ACCRF Event where more than two hundred guests mingled with top researchers and over $75,000 was raised for the foundation. The next day, patients and their loved ones shared stories, hopes and laughter at the patient gathering.

Boston Patient Gathering 2016
Kellie's Krew hosted their 8th annual race in Dunn, North Carolina, USA on August 27th. Hundreds turned out for the 5K, 10K and fun run races in a lively community event. The evening before, a dozen patients enjoyed a fabulous dinner with their families and the organizers. More than $110,000 has been raised for ACCRF by the happy and hospitable members of Kellie's Krew.
Kellie's Krew 2016
ACC patients in Europe have rotated their gatherings through several countries over the past decade. Following last year's meeting in London, about ten patients congregated in Sebes, Romania in early September to share their experiences and companionship. Participants traveled from Germany, the Netherlands and the United Kingdom, among other countries. ACCRF Executive Director Jeff Kaufman called in by Skype to discuss research developments. 

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

 Please Help Support ACC Research