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HDGC Impact Study NoticeHDGC Clinical Guidelines Updated

Increasing awareness of HDGC and the rapid advances in genetic diagnostic tools, endoscopic modalities and the increasing use of laparoscopic surgery led a group of clinical geneticists, gastroenterologists, surgeons, oncologists, pathologists, molecular biologists, dietitians and patients’ representatives from nine different countries to convene a workshop in order to update the management guidelines for this condition set in 2010 and to propose directions for future research.

Read the latest HDGC Clinical Guidelines

The workshop was held during the month of March 2014 in Nijmegen, The Netherlands. Karen Chelcun Schreiber had the privilege of participating in the workshop as Chair of the Patients and Dietitians group, and to represent those patients and families she has talked with and learned from over the years though her work with No Stomach For Cancer.

IGCLC guideline 2015 JMG 1 pg1

The group organized to discuss a variety of topics including genetic testing, surgery, surveillance strategies, pathology reporting and the patient’s perspective on multiple aspects, including diet post gastrectomy. The new guideline was published online in May 2015 in the Journal of Medical Genetics.


Workshop discussions were focused on five major topics:

  • Genetic counseling and mutation analysis
  • Endoscopic surveillance and screening of cancer
  • Risk-reduction surgery of the stomach and breasts
  • Pathological specimen processing and diagnosis
  • Patients’ and dietician’ perspective

Updates and new areas addressed in the latest guideline include:

  • Updated cancer risks for CDH1 mutation carriers
  • Broadened criteria for genetic testing
  • Genetic testing lab perspective
  • Panel sequencing
  • Psychosocial effects of counseling
  • Pregnancy and assisted reproduction
  • Post-gastrectomy symptoms and treatment options

    Diffuse Gastric Cancer map

  • Post-surgical care and nutrition
  • Patient advocacy and the next steps in patient care and HDGC research

In addition, two supplementary protocols have been published along with the guideline:

Updated Consensus Guidelines for HDGC

Download the updated guideline: Hereditary diffuse gastric cancer: updated clinical guidelines with an emphasis on germline CDH1 mutation carriers, May 2015

Read about the 2014 IGCLC Workshop

Hereditary Diffuse Gastric Cancer: The past, the present, and hope for the future

Speaker: Dr. Parry Guilford, BSC, MSC, PHD

Professor, Cancer Genetics Laboratory
University of Otago, Dunedin, New Zealand