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Familial Gastric Cancer Study and HDGC Data Register

Familial Gastric Cancer Study

The Familial Gastric Cancer Study was set up in 1997 by Professor Carlos Caldas originally to collect information and blood samples from families with clustered cases of gastric cancer in the UK. 

Current study aims:

  • Identify those families who fit the criteria for Hereditary Diffuse Gastric Cancer (HDGC and provide long-term follow-up of CDH1 positive mutation carriers.  Also, to search for new genes in those families where no CDH1 mutations are found.
  • Collect detailed information (clinical, psychological and molecular) on individuals undergoing clinical testing for mutations in order to assess the implications of testing, surveillance and risk-reducing surgery on these individuals.  This is done using Quality of Life questionnaires
  • Determine the most effective form of endoscopic surveillance in individuals at high risk of stomach cancer..  An endoscopy protocol has been developed using a Trimodal imaging technique in order to try to detect micro foci of gastric cancer. 
  • Information is being gathered to determine the general health consequences of gastrectomy and we hope to expand this area in the future.

 

Hereditary Diffuse Gastric Cancer Registry 

A few people taking part in the study will have an alteration (mutation) in a gene called CDH-1.  We would like to gather more information from them about their own family mutations and data from quality of Life Questionnaires (QOL) which will be held on the research data register in Cambridge.  QOL questionnaires will be to participants at regular intervals e.g.following genetic testing, endoscopic screening and before/after surgery and will help us to measure the impact of screening and surgery including morbidity, quality of life and the psychological effects of surgery.