Common Cancer Testing Terminology

The Consistent Testing Terminology Working Group is composed of more than 40 patient advocacy organizations from solid tumors and hematologic malignancies, professional societies, pharma, biotech, diagnostics companies, and testing laboratories committed to clarifying and promoting consistent use of common terms for biomarker and germline genetic testing.

Background

Research shows that despite widespread acceptance of the importance of testing, actual testing rates lag far behind best-practice recommendations for both biomarker testing for somatic (acquired) mutations and other biomarkers, and for germline genetic testing for identifying germline (inherited) mutations (also known as variants).

Analysis by the Consistent Testing Terminology Working Group indicates that varied testing terms are an obstacle to patient communication with providers about testing for their specific cancer type. The pan-cancer working group identified at least 33 terms related to biomarker, genetic, and genomic testing for cancer being used in patient education today.

This varied terminology is one patient-identified reason for confusion about testing, which impedes effective communication with providers and understanding about what testing means for their care.

To best serve the needs of cancer patients, it is time to harmonize language, simplify communications, and clearly explain the goals of testing. Recommended terms identified include the following:

  • “Biomarker testing” to discuss tests that identify characteristics, targetable findings, or other test results originating from malignant tissue or blood
  • “Genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk” for tests to identify germline mutations (also known as variants in the genetics community).

The Consistent Testing Terminology Working Group has published a white paper with industry-wide recommendations for precision medicine testing terms to be utilized in patient education and communication. An abstract on the Working Group’s recommendations was first published in May 2020 as part of the American Society of Clinical Oncology (ASCO) Annual Meeting Virtual Library.

For more information on the Consistent Testing Terms Working Group, please contact Nikki Martin, Director, Precision Medicine Initiatives, LUNGevity Foundation, at [email protected].

postcard about terminology

A unified voice will help the medical community and patients achieve common understanding about the benefits of testing. Join a movement to promote consistent use of common terms for biomarker and germline genetic testing and work together to achieve better communication between patients and providers about testing needs.

Download our materials here:

White Paper

Infographic

Healthcare Provider Information Card

Germline Survey Data Results

ASCO Annual Meeting 2020 Abstract

Oncology Nursing Society Annual Congress 2021 Abstract

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Use Cases

At the Consistent Testing Terminology Use Cases Workshop on March 11, 2021, use cases for cancer terminology in several cancer types were presented. Below are the reports from the workshop.

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Participating Organizations

Alike and Kickn Be the Match CancerCare Cancer Support Community Cholangiocarcinoma Foundation Clearity Foundation CLL Society Colorectal Cancer Alliance Fight Colorectal Cancer FORCE International Cancer Advocacy Network Leukemia and Lymphoma Society Life Raft Group Living Beyond Breast Cancer Lung Cancer Action Network LUNGevity Lymphoma Research Foundation American Cancer Society National Lung Cancer Roundtable National Ovarian Cancer Consortium Ovarian Cancer Research Alliance Pancreatic Cancer Action Network Prsonalized Medicine Coalition Prostate Cancer Alliance Sharsheret Susan G. Komen


Advanced Practitioner Society for Hematology and Oncology Association of Community Cancer Centers Association of Molecular Pathology American Society for Clinical PathologyInternational Association for the Study of Lung Cancer National Society of Genetic Counselors


Abbvie Amgen AstraZeneca Bayer Blueprint MedicinesBoehringer IngelheimBristol-Myers Squibb Caris Life Sciences Daiichi Sankyo Elevation Oncology Foundation Medicine GenentechGlaxoSmithKline Integrated Oncology Lilly Myriad Women's Health NeoGenomics Novartis Personal Genome Diagnostics Pfizer Oncology Takeda Oncology ThermoFisher Scientific


With thanks to WS Collaborative for drafting the Working Group White Paper
WS Collaborative

 

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