May 10, 2013
1 min read

Death rates, age at diagnoses lower among younger generations in polyposis registry

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Age at diagnosis and death rates are lower in younger generations of multigenerational families enrolled in an adenomatous polyposis registry, according to data presented at The American Society of Colon and Rectal Surgeons Annual Meeting in Phoenix.

Researchers evaluated data from 12 families with three or more generations enrolled in the Cleveland Clinic Polyposis Registry, which includes 4,590 patients with familial adenomatous polyposis (FAP).

James M. Church, MD

James M. Church

“The [registry] helps with patient care, education and research,” researcher James M. Church, MD, department of colorectal surgery at the Cleveland Clinic, told “Patients are diagnosed, care of patients and families is coordinated, and genetic counseling and testing takes place. Through the registry, physicians recommend and carry out treatment (eg, regular endoscopy, removal of polyps, etc.) and conduct follow-ups.”

The cohort included nine families with three enrolled generations and three families with four enrolled generations, with 100 individuals with polyposis out of 335 enrolled family members. Polyposis was observed in the oldest enrolled generation in 28% of cases, in 37% of the middle generation and 26% in each of the third and fourth generations. Mean age at FAP diagnosis decreased from 34 ± 11 years in the oldest enrolled generation to 21 ± 10 years in the second generation, 13 ± 9 years in the third and 10 ± 3 years in the fourth.

Among 21 patients in the eldest generation, 10 had died, including six cancer-related deaths. In the second generation, eight of 37 patients had died, including six due to cancer. Three patients of 35 with FAP in the third generation had died, with no deaths due to cancer, and none of the youngest generation has died.

“In multigenerational families, FAP is now being diagnosed at puberty,” the researchers wrote. “Death rates are decreasing, and the registry is fulfilling its mission.”

For more information:

LaGuardia L. S19: Mission Control in Familial Adenomatous Polyposis: An Analysis of Cancer Deaths in Families, Generation by Generation. Presented at: The American Society of Colon and Rectal Surgeons Annual Meeting 2013; April 27–May 1, Phoenix.