• 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. We thank you for your willingness to help!

    Several academic medical centers have active ACC research programs that freeze and maintain large biorepositories of banked tumor specimens. These 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. Often, the surgeons at these leading cancer centers will approach patients prior to surgery for consent to bank and analyze their tumors. They also may provide tumor profiling services as part of their research activities and their clinical treatment planning. Examples of such academic medical centers with active ACC biobanking programs include:

    • Columbia University Comprehensive Cancer Center (New York, NY, USA)
    • Dana-Farber Cancer Institute (Boston, MA, USA)
    • Massachusetts Eye & Ear Institute/Massachusetts General Hospital (Boston, MA, USA)
    • MD Anderson Cancer Center (Houston, TX, USA)
    • Memorial Sloan Kettering Cancer Center (New York, NY, USA)
    • Peter MacCallum Cancer Centre (Melbourne, Australia)
    • Radboud University Medical Center (Nijmegen, Netherlands)
    • The Christie Hospital (Manchester, UK)
    • University of Florida Cancer Center (Gainesville, FL, USA)
    • University of Michigan Rogel Cancer Center (Ann Arbor, MI, USA)

    For patients not being treated at these institutions, there are two alternatives for getting your tumor from the operating room to researchers working on ACC. By choosing one of these options, your tumor donation will help to drive the science that fuels new therapies for ACC patients.

    (1) Pattern.org (for patients in the United States)
    ACCRF is excited to be working with Pattern.org to empower patients to direct their excess cancer tissue samples to research projects. Initially, samples donated via Pattern.org will be sent to the Broad Institute of MIT and Harvard, where they will be used to attempt to develop and genetically characterize research models.

    Should a patient decide to provide consent, Pattern.org arranges for excess tissue to be shipped to a research lab. Currently, only patients being treated at institutions in the United States are eligible. If you or a patient you know has an upcoming surgery, you can visit Pattern.org to learn more about the project and access an electronic consent form.

    (2) Manchester Cancer Research Centre Biobank (for patients in the United Kingdom)
    The Christie Hospital in Manchester, UK, is a reference center for patients with adenoid cystic carcinoma. Through the affiliated Manchester Cancer Centre Biobank, all ACC patients in the UK are eligible to have their tumor specimens collected, maintained and analysed for research purposes (even if not primarily followed by a consultant in Manchester). However, to become eligible, patients must have at least one visit with Dr. Robert Metcalf, a consultant Head and Neck Cancer Medical Oncologist at the Christie Hospital. Interested patients may contact his Clinical Secretary by phone at 0161 446 8581.

    Your tumor donation will bring closer the day when new therapies will benefit ACC patients. The ACC community thanks you!