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Summary of Editorial: “Establishing a center of excellence for hereditary diffuse gastric cancer syndrome” Published in Jan 2019 in the Journal of Surgical Oncology

Because it is thought that fewer than 5% of stomach cancer cases are due to Hereditary Diffuse Gastric Cancer (HDGC) syndrome, the International Gastric Cancer Linkage Consortium (IGCLC) guidelines for management of HDGC families recommend that care is sought at an HDGC Center of Excellence.

Many patients who are newly diagnosed with HDGC ask where to seek care, or how to find a Center of Excellence. The editorial recently published in the Journal of Surgical Oncology, Establishing a center of excellence for hereditary diffuse gastric cancer syndrome, aims to answer these questions and describe the importance of establishing Centers of Excellence for HDGC.

The first reason that patients are encouraged to seek care at a Center of Excellence is that HDGC requires a team of providers from various medical and surgical specialties who have experience with this rare cancer syndrome. Team members include medical oncologists, surgical oncologists, gastroenterologists, nutritionists, genetic counselors, pathologists, and more. The complex medical issues that come with a diagnosis of HDGC syndrome require comprehensive care for many perspectives. It is difficult, if not impossible, to find an established team who has experience caring for HDGC families at a small or rural hospital. Additionally, the specific procedures for early detection, surveillance, and prevention of HDGC-associated cancers are best performed by experts in the field who have learned how to perform these procedures using high-quality equipment and methods. Patients need frequent and long-term follow-up with a team that is knowledgeable about their specific conditions.

The second reason that a Center of Excellence is important is that HDGC affects the entire family. Counseling by certified genetic counselors can help patients understand the inheritance patterns of genetic conditions, clarify and explain test results, and make recommendations to other family members. “Cascade testing” describes genetic testing for family members after one patient tests positive for a genetic mutation. Certified genetic counselors at HDGC Centers of Excellence can help patients and families pursue cascade testing so that care is provided to all family members who may be affected by a gene mutation.

Finally, the future for HDGC families depends on research, and established Centers of Excellence are uniquely able to gather information and study HDGC. Larger numbers of patients and families cared for at one medical center can provide a wealth of data that can positively impact care for future patients affected by HDGC syndrome.

Unfortunately, there is no specific criteria to determine what hospitals or medical centers qualify as Centers of Excellence. Hopefully this will be determined in the near future.

Find publication at Wiley Online Library
Journal of Surgical Oncology: Establishing a center of excellence for hereditary diffuse gastric cancer syndrome
or at NIH Library
NIH: Journal of Surgical Oncology: Establishing a center of excellence for hereditary diffuse gastric cancer syndrome

If you are unable to view either of these published papers email karen@hdgcinfo.org for a copy.

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