Lynch syndrome is a common yet often underdiagnosed inherited condition that increases one's risk for a variety of cancers, including colorectal, uterine, ovarian, stomach, pancreas, urinary tract, skin and other malignancies. 1 in 300 people in the U.S. has Lynch syndrome, yet 95% are unaware they carry this genetic condition.
Who We Are
In 2019, Dana-Farber Cancer Institute launched the Lynch Syndrome Center, which is the largest and most comprehensive multidisciplinary cancer genetics group in the region that specializes in coordinating all aspects of care for people with Lynch syndrome.
Founded by Sapna Syngal, MD, MPHand under the direction of Matthew Yurgelun, MD, the center offers a unique model of coordinated care that serves patients at every stage of their Lynch syndrome journey. The center provides “one-stop shopping”, allowing patients to receive their care all under one roof.
As part of the Lynch Syndrome Center, patients will have access to our team over 30 providers including genetic counselors, medical oncologists, gastroenterologists, geneticists, nurse practitioners, and oncology nurse navigators, as well as our program coordinator. Our team will quarterback patient care by involving the primary care physician, coordinating with existing specialists and referring to other specialists if necessary.
Clinical Resources/What We Do
Our Center consists of specialists with extensive clinical and research expertise in Lynch syndrome. These specialists collaborate to manage the comprehensive and longitudinal care of patients by:
- Providing genetic counseling and testing for those at risk for Lynch syndrome
- Creating personalized screening plans aimed at preventing Lynch syndrome-related cancers
- Coordinating care with experts in surgery, gastroenterology, gynecology, dermatology, and oncology
- Working with an individual’s established Lynch syndrome specialists to provide state of the art, personalized, preventive care
- Conducting cutting-edge research while translating breakthroughs to leading-edge prevention and treatment methods
Research Initiatives
The Lynch Syndrome Center Patient Registry and Biobank is launching this year and will focus exclusively on patients with Lynch syndrome. The registry will collect clinical data, detailed diet and lifestyle information, blood and tissue specimens on individuals as they undergo routine preventive care through the Lynch Syndrome Center, to facilitate novel discovery efforts. In addition to the Patient Registry and Biobank, we have various research studies and clinical trials that are made available to eligible and interested patients.
Educational Resources
One of our key Lynch Syndrome Center initiatives is to promote education and raise awareness of Lynch syndrome, through our principle event, LYNKED IN. LYNKED IN is our free annual patient conference for individuals with Lynch syndrome, their families and caregivers. This conference provides attendees with updates on guidelines for screening and prevention, strategies for communicating one’s cancer risk with family, and information about the latest advances in treatment.
The Lynch Syndrome Center has also partnered with various patient advocacy groups and support groups. In 2021, we launched our first online presence with a Facebook group.
How to Refer
The Lynch Syndrome Center is here to work with you to oversee your patient’s Lynch syndrome care. If you have a patient who may be at risk for Lynch syndrome or has Lynch syndrome, we would be happy to assist.
If you have questions about the Lynch Syndrome Center or would like to refer a patient, please call 617-582-9113 or email us at LynchSyndromeCenter@dfci.harvard.edu.
Sincerely,
Sapna Syngal, MD, MPH, Founder
Matt Yurgelun, MD, Director