UCSF Leads the Way in Lynch Syndrome Research and Care

Specialized center provides coordinated, multidisciplinary care and access to cutting-edge prevention trials.

Mar. 20, 2026 at 10:18am by Ben Kaplan

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When Allen Rush learned he carried the genetic mutation known as Lynch syndrome, he understood the stakes. Years earlier, his daughter Jacqueline was diagnosed with colorectal cancer at age 20 due to Lynch syndrome, and she died three years later. Rush did not know about Lynch syndrome even though his father had passed away from colorectal cancer in his mid-fifties. Now, Rush undergoes annual colonoscopies at UCSF and is participating in a National Institutes of Health (NIH)-sponsored clinical trial designed to prevent cancer in people with Lynch syndrome.

Why it matters

Lynch syndrome affects about 1 in 279 people in the U.S. and significantly increases the lifetime risk of colorectal cancer and several other cancers. An estimated 95% of people with Lynch syndrome do not know they carry the mutation. The UCSF Lynch Syndrome Center is working to change that by providing coordinated, multidisciplinary care and access to cutting-edge prevention research.

The details

The vaccine trial represents a different strategy: stimulating the immune system to recognize and destroy abnormal cells before they become tumors. Participants are randomly assigned to receive either the vaccine or a placebo, and neither patients nor investigators know which was administered. Researchers will compare cancer outcomes over time to determine whether the vaccine reduces cancer incidence. The UCSF Lynch Syndrome Center also offers an uncommon service: performing endometrial biopsies, which screen for uterine cancer, at the same time as colonoscopy under sedation.

  • Jacqueline Rush was diagnosed with colorectal cancer at age 20.
  • Allen Rush's father passed away from colorectal cancer in his mid-fifties.
  • The UCSF Lynch Syndrome Center was launched in 2025.

The players

Allen Rush

A patient who carries the genetic mutation known as Lynch syndrome and is participating in a National Institutes of Health (NIH)-sponsored clinical trial designed to prevent cancer in people with Lynch syndrome.

Jacqueline Rush

Allen Rush's daughter who was diagnosed with colorectal cancer at age 20 as a result of Lynch syndrome and died three years later.

Aparajita Singh, MD

The director of the UCSF Lynch Syndrome Center.

Bill Shea

A patient who first learned he had Lynch syndrome after being diagnosed with colon cancer at age 43.

UCSF Lynch Syndrome Center

A specialized center within the Division of Gastroenterology at UCSF that provides coordinated, multidisciplinary care for approximately 1,000 patients with Lynch syndrome.

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What they’re saying

“Colorectal cancer is one of the cancers that if you catch it early it can be easily treated- or even screened early enough, you can prevent it. Had we known about Lynch syndrome before, none of this would have happened.”

— Allen Rush, Patient

“If we can prevent cancer instead of just detecting it, that changes everything.”

— Allen Rush, Patient

“I tell my patients, I'm not just your gastroenterologist - I'm your Lynch provider. We talk about everything that's due, when it's due, and I help coordinate the referrals. The biggest burden for patients is not knowing what's needed and when.”

— Aparajita Singh, MD, Director, UCSF Lynch Syndrome Center

“Without that proactive plan, I would not be here. Build a strong medical team. Believe in your doctors. Execute the plan.”

— Bill Shea, Patient

What’s next

Researchers will continue to monitor the progress of the NIH-sponsored clinical trial to determine whether the vaccine reduces cancer incidence in people with Lynch syndrome.

The takeaway

The UCSF Lynch Syndrome Center is leading the way in providing specialized, coordinated care and access to cutting-edge prevention research for a condition that affects an estimated 1 in 279 people in the U.S. but remains largely unknown. By raising awareness and advancing both treatment and prevention, the center is working to transform outcomes for those with Lynch syndrome.