Living Cell Line Now Publicly Available for Desmoid Tumor Research We are thrilled that through our research at The Broad Institute and partnership with Pattern.org, the first publicly available desmoid tumor living model, called a cell line, has been generated and is now available for researchers to purchase at ATCC, a renowned public bio-repository. Cell lines are critical for researchers to learn more about the disease and in testing new therapeutic options. The availability of this cell line is an initial, but very significant milestone as we work to provide verified and standardized resources to our research community. We thank all of our desmoid patients who have consented to donate tissue through Pattern.org, as you are instrumental in helping expedite the development of improved therapies. If you have an upcoming surgery and would like to donate tissue, all you need to do is fill in an online consent form prior to surgery at Pattern.org and they will handle all the arrangements, working with your surgical institution. There is no cost or any additional effort on your part to participate! DTRF Patient Registry & Natural History Study The DTRF Patient Registry is a powerful way for desmoid tumor patients and their family members to contribute directly to research that will improve our understanding of desmoid tumors. This important DTRF initiative collects de-identified survey data inputted by patients about their desmoid tumor patient experience. The data is aggregated and analyzed to create a natural history study of the disease, accessible to researchers. Patients and caregivers can join the registry here: DTRF.iamrare.org. WATCH an informative video: "DTRF Patient Registry & Natural History Study 101"at https://vimeo.com/849314076. Dr. Kelly Mercier provides an overview of these important research tools. Learn more about the DTRF Patient Registry and Natural History Study at https://dtrf.org/patient-registry/.
Jeanne Whiting and Barbara Van Hare (Rare Cancer Research Foundation) meet at ATCC.
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