What if We Could Find Cancer Sooner? The EDISYN Consortium at the 2022 Living LFS Family Camp

How can we improve screening of patients with a predisposition to developing cancer? Liquid biopsies and circulating tumor DNA (ctDNA) have the exciting potential to detect cancer sooner in those with LFS. Those positive for a TP53 mutation who haven't already can still enroll in the study! Call Kathy Nichols, the NIH Family Studies Referral Nurse, at 1-800-518-8474 to participate.

Living LFS is a proud member of the EDISYN Consortium (EDISYN: Early Detection in SYNdromic Cancers), which was established to identify new ways to detect cancer in patients with Li-Fraumeni syndrome and other cancer predisposition syndromes before tumors are large enough to cause symptoms or be detected by imaging. In support of this work, Living LFS fully funded the creation of the EDISYN website, and kick started EDISYN's work by offering nearly 30 attendees of the 2019 Living LFS Family Camp, members the Living LFS community who have a TP53 mutation, the opportunity to participate in an EDISYN study in which LFS patients donate blood and are monitored over time. Over 30 attendees of the 2022 Living LFS Family Camp also donated blood and enrolled in the study. Living LFS is proud to further EDISYN's efforts to find cancer sooner for the LFS community.

In this Zoom presentation at the 2022 Living LFS Jennifer Mallory Family Camp at Rocky Mountain Village Easterseals in Empire, Colorado, Luke Maese, DO from University of Utah Huntstman Cancer Institute explains EDISYN's work. Dr. Maese answers audience questions with the help of EDISYN Consortium member Brian Crompton, MD from Dana-Farber Cancer Institute.

00:00 - Intro
00:57 - Presentation
03:00 - Li-Fraumeni syndrome Clinical Care - how can we improve?
05:57 - The goals of the EDISYN Consortium
08:20 - Liquid Biopsies and Circulating Tumor DNA (ctDNA)
11:35 - EDISYN Participating Institutions
13:06 - EDISYN Roadmap
28:14 - The EDISYN website at EDISYN.org
30:00 - How to participate in EDISYN's work
Questions:
30:57 - Does participating in another liquid biopsy study conflict with participating in the EDISYN study?
34:09 - Does previous cancer diagnosis or current malignancy exclude you from participating?
35:37 - How do donate blood to the study in future if you’re not followed by one of the EDISYN institutions?

• Category

  Li-Fraumeni Syndrome