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.
If your surgeon does not approach you about donating your tumor from an upcoming surgery, then you have two alternatives for getting your tumor to researchers working on ACC.
(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. Samples donated via Pattern.org will be sent to the MD Anderson Cancer Center where they will become part of the Rare Tumor Profiling Initiative. Donated tumors will help researchers understand the molecular profiles of ACC tumors and, if large enough, may be used to create preclinical models to drive further research.
Once a patient provides 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. Older tumor blocks and slides are not being sought, only fresh surgical specimens. 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!