EDISYN: Early Detection In Syndromic Cancers

improving outcomes for patients with LFS
and other cancer predisposition syndromes

EDISYN: Early Detection in Syndromic Cancers

The EDISYN Consortium 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. Previous studies demonstrate that early detection of cancer can improve treatment outcomes. However, screening strategies, especially for patients with Li-Fraumeni Syndrome, rely heavily on annual whole-body MRIs. While this imaging modality has improved early cancer detection, concerning findings can too often be false-alarms. Furthermore, the expense of this testing and the time needed to complete the study limits its use to no more frequently than once a year.


Developments in Early Cancer Detection

Recent studies have shown that the fragments of tumor-derived DNA can be detected in the blood of patients with cancer. This “circulating tumor DNA” can be detected with newly developed ultra-sensitive sequencing technologies. One of the primary focuses of the EDISYN consortium is to leverage these new liquid biopsy technologies to detect circulating tumor DNA in patients with cancer predisposition syndromes, including Li-Fraumeni Syndrome, who have developed cancer but who have not yet manifested clinical symptoms. We believe that detection of circulating tumor DNA in asymptomatic patients will lead to early cancer detection when cancers are still easier to treat and more likely to be cured. 

To address the unmet needs of the cancer predisposition community for more specific and less invasive early cancer detection strategies, the EDISYN consortium was founded. This group brings together physician-scientists from across the United States who have focused clinical and research interest in improving outcomes for patients with Li-Fraumeni Syndrome and other cancer predisposition syndromes. We are partnering with patients who have generously agreed, through participation in research and banking studies, to contribute data and blood samples to develop novel non-invasive and widely accessible liquid biopsy tests that can detect cancer at its very beginning stages, prior to what is currently possible with current techniques.

Find out how you can participate, donate, and follow along our journey of discovery.