Kia Ora (Hello)!

In March of 2019, the University of Otago along with three supporting organizations hosted a three-day meeting to begin the review and revision process of the clinical guidelines for Hereditary Diffuse Gastric Cancer syndrome. The meeting of the International Gastric Cancer Linkage Consortium (IGCLC) was held in the beautiful lake town of Wanaka, New Zealand.

At this guidelines update meeting, medical and research professionals, patient advocates and HDGC family members from around the world met to review research findings, share ideas and discuss the care of patients and families with a CDH1 gene mutation. HDGC experts from throughout the world presented best practices and current research projects. Countries represented at the meeting included New Zealand, the Netherlands, Canada, Portugal, South Korea, France, the United Kingdom, Australia, Japan, Chile, Switzerland and the United States.

Topics presented included panel testing and CDH1 variants of uncertain significance (VUS), HDGC centers of excellence, endoscopic surveillance, principles of gastric surgery, quality of life after gastrectomy, breast cancer surveillance, and pharmacology after gastrectomy.

Specialty areas were organized into four work groups: 1) Emerging Science, 2) Genetics/Pathology, 3) Surgery/Gastroenterology, and 4) Family Perspectives.

Members of these groups met at various points throughout the workshop: small and large groups, by specialty area, and in interdisciplinary groups, to discuss the current HDGC guidelines that were published in the Journal of Medical Genetics in 2015.

Probably the most rewarding aspect of the IGCLC meeting for everyone was the inclusion of patients and families affected by HDGC. Those who traveled to Wanaka from other countries had the opportunity to meet and learn from Maori families who are also affected by HDGC at a Family Day before the conference. During the conference sessions, clinicians and researchers welcomed us as part of their “Whanau” (Maori word for family) and asked us to share our experiences, questions, concerns, and wishes for the care of HDGC patients around the world. Our input was heard and appreciated!

A few notable and exciting observations at the 2019 meeting are increased interest and participation of medical and research professionals from the US, the addition of a pharmacist to the group, and plentiful invitations for collaboration amongst international members of the group that are already leading to collaborative HDGC research projects.

Over the next several months, the patient and family group will be working to review and make additions to our portion of the 2015 HDGC guidelines. Some of the important topics that we are hoping to expand include nutrition, drug absorption after gastrectomy, family planning, long term post gastrectomy care, and development of HDGC centers of excellence. We hope to see the updated guideline completed and published within the first or second quarter of 2020.

If you would like to share your ideas, we invite you to MAKE YOUR VOICE HEARD.

A huge thanks to Dr. Parry Guilford (is that a seahorse tie?) and Tanis Godwin from the Cancer Genetics Laboratory at University of Otago, and Dr. Vanessa Blair from St. Marks Breast Centre in Auckland, for organizing the IGCLC conference and welcoming us to beautiful New Zealand!

Kia Kaha (stay strong),

Johanna D’Addario, Connecticut USA

Karen Chelcun Schreiber, Wisconsin USA

Kia ora (Māori: [kia ɔɾa], approximated in English as /ˌkiːə ˈɔːrə/ KEE-ə OR-ə) is a Māori-language greeting which has entered New Zealand English. It translates literally as “have life”, “be well”, or “be healthy”, and is used as an informal greeting equivalent to “hi” or “hello”

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