Clinical Hereditary GI Cancers Registry

The clinical hereditary GI cancers registry is a program with the main goal of cancer prevention and early detection for patients with a significantly increased risk of developing cancer through ongoing review and individual adjustment of every patient’s care plan.  The registry is run by a multidisciplinary team of specialists, primarily from The Jay Monahan Center for Gastrointestinal Health, with expertise in genetics, gastroenterology, and colorectal surgery.

This registry is available to patients of the Center for Advanced Digestive Care (CADC) with a confirmed or suspected diagnosis of a hereditary GI cancer syndrome. Hereditary GI cancer syndromes can significantly increase an individual’s risk of developing GI cancers as well as cancers in other parts of the body.  This registry covers the following diagnoses, both confirmed and suspected, among others:

  • Lynch syndrome
  • Familial adenomatous polyposis syndrome
  • MUTYH–associated polyposis syndrome
  • Cowden syndrome
  • Juvenile polyposis syndrome
  • Peutz-Jeghers syndrome
  • Unexplained polyposis
  • Serrated polyposis syndrome
  • CHEK2
  • Hereditary diffuse gastric cancer

How it Works

The registry aims to provide the best care for its patients by establishing and optimizing personalized care plans for each patient. These care plans are developed at clinical case conferences, held regularly by our faculty. When a patient case is reviewed at these conferences, each specialist in the group provides current information regarding the patient’s diagnosis, updates in management guidelines from professional medical societies, new therapies that may be available, and any research studies or clinical trials that may available to the patient. Once the team agrees upon an individualized care plan for a specific patient, it is shared with the patients by our genetic counselor.

Each patient’s case is reviewed approximately once per year, at which time their care plan may be revised as medical knowledge continues to develop. By proactively reviewing cases, the CADC hopes to provide highly personalized care for those with significantly increased risk for GI cancers.

Benefits of Participation

  • Access to a team of specialists with expertise in your confirmed or possible diagnosis of a hereditary GI cancer syndrome, including a genetic counselor
  • A personalized care plan that is regularly updated as the medical community learns more about your diagnosis
  • Helpful reminders to schedule recommended medical appointments

Enroll in the Clinical Hereditary GI Cancers Registry

If you or your patient have a confirmed or suspected diagnosis that is listed above and are interested in enrolling in the clinical hereditary GI cancer registry, please email cadc-genetics@nyp.org for more information.