• Assist in Research

    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, won’t interfere with your treatment, and maintains your privacy. The tissue is most valuable if cooled or frozen immediately after surgery, so ask your surgeon about tumor donations and complete the appropriate forms prior to surgery. Otherwise, your tumor is likely to be fixed in paraffin, limiting the types of studies that may be performed on it.

    There are four established alternatives for getting your tumor from the operating room to researchers working on ACC. By choosing any of these options, your tumor donation will help to drive the science that fuels new therapies for ACC patients. We thank you for your willingness to help.

    (A) Salivary Gland Tumor Biorepository
    The following institutions are part of a collaborative Salivary Gland Tumor Biorepository supported by the National Institute of Dental and Craniofacial Research (NIDCR) and ACCRF:

    • MD Anderson
    • Johns Hopkins University
    • Rhode Island Hospital
    • University of Mississippi
    • University of Pittsburgh
    • University of Virginia

    If you are having your surgery at one of these academic medical centers, they may ensure that your tumor and relevant clinical information become "banked" in the proper form and available later for researchers. Simply confirm with your surgeon that the appropriate paperwork is in place prior to surgery.

    (B) Massachusetts Eye and Ear Institute (MEEI)
    If your surgery will occur at MEEI, please talk to your surgeon about banking your tumor in the “ACC Biorepository” co-funded by ACCRF. For questions or assistance with the tumor donation process, you or a relative may contact Armida Lefranc by phone (617-573-3713). When you call, please provide the date of the surgery at MEEI, name of the surgeon and the tumor location.

    (C) Pattern.org
    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 research models.

    ACCRF’s partnership with Pattern.org and the Broad Institute is part of a larger effort to establish and genetically characterize cancer cell lines, which are cancer cells that keep dividing and growing over time, under certain conditions in a laboratory. In developing these cancer cell lines, the Broad Institute is trying to enable the scientific community to improve our understanding of cancer, including ACC.

    ACCRF is engaging its patient community to directly donate tissue samples through Pattern.org. This website contains information about research projects ACCRF is supporting. Pattern.org links to an electronic consent form where patients can learn more about projects, find contact information for the protocol team at the Broad Institute so they can reach out should they have questions, and provide consent if they wish to contribute. 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. If you wish to learn more about the Cancer Cell Line Project from the Broad Institute directly, you can email them at cellproject@broadinstitute.org

    (D) University of Virginia
    The University of Virginia maintains an ACC Registry that collects tumor specimens and survey questionnaires. Please contact them well before your surgery date because they often need 7-10 days advance notice to make arrangements with your hospital. For questions or assistance with the tumor donation process, you or a relative may contact Craig Rumpel by email (crumpel@virginia.edu) or phone (434-982-6453). When you email or call, please provide the date of the surgery, the institution where the surgery will be performed, and the tumor location.

    Your tumor donation will bring closer the day when new therapies will benefit ACC patients.

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