The
Polyposis
Registry

Donations and History

How has research over the years improved life with Polyposis?

1960s: the call up programme continued and patients who were found to have FAP had the IRA operation. The surgeons thought that as long as the patients with FAP were monitored after surgery they were “cured” but HJR Bussey continued to keep careful records of each patient.

1970s: a trial looking at the effects of Vitamin C on the polyps in FAP showed that it did not have an effect. The study was, however, invaluable because much was learned about how to get an accurate record of the size and number of polyps.

1977: first restorative proctocolectomy, also known as the pouch operation, was done at St Mark’s, by Sir Alan Parks, for a patient with FAP.

Sir Alan Parks
Sir Alan Parks

1980s: a certain type of pigmentation of the retina was found to be associated with FAP.

1980s: scientists at the Imperial Cancer Research Fund located the gene causing FAP to Chromosome 5 thanks to the many, many blood samples given by patients at St Mark’s over a period of twenty years.

1990s: the exact location of the gene was identified leading to predictive genetic testing for people at risk of inheriting FAP.

1990s: post IRA rectal surveillance in the Endoscopy department with the use of a flexible sigmoidoscope was started. Patients can now see what the doctor sees, which gives them improved knowledge of their condition. Also, most polyps can be treated there and then if necessary, which saves the two to three day ward admissions that patients would have to endure in the past.

1990s: a study of 102 patients showed that duodenal polyposis is present in almost all patients with FAP.

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