S. Michelle Shiller, DO, AP/CP, MGP @PathGroupLabs @LUNGevity Pan-Cancer Consortium Moves to Clarify and Promote Consistent Use of Common Terms for Biomarker and Germline Genetic Testing
S. Michelle Shiller, DO, AP/CP, MGP at PathGroup discusses how the Pan-Cancer Consortium Moves to Clarify and Promote Consistent Use of Common Terms for Biomarker and Germline Genetic Testing
A white paper outlining guidelines for the use of research terms in precision medicine for patient education in the cancer world has been released by a LUNGevity Foundation-led coalition of 41 leading patient advocacy groups, professional societies, and industry partners. The use of clear terminology will greatly increase patient knowledge and comprehension of possible lifesaving testing strategies available for both new diagnosis of cancer and disease progression or recurrence.
Research shows that real test rates lag well behind best-practice guidelines for both biomarker testing for somatic (acquired) mutations and other biomarkers, and for germline genetic testing for detecting germline (inherited) mutations (also known as variants), despite general recognition of the importance of testing. The Clear Testing Terminology Working Group (Working Group) review reveals that language difference is a primary barrier to patient contact with clinicians regarding testing for their particular type of cancer. In addition, clear language development will improve patient comprehension and communication, foster collaborative decision-making, encourage value-based treatment, and ensure consistency in the implementation of policy.
The Working Group is a consortium of 20 advocacy groups for cancer patients representing solid tumor and hematologic malignancies, three specialist societies, and 18 research laboratories and pharmaceutical and diagnostic firms. Several events, led by various individual patient advocacy organisations and professional societies, have formed the basis for this initiative over the course of several years. A multi-faceted dissemination and coordination initiative has been initiated by the Working Group to ensure that its guidelines and supporting materials are widely accessible across all key stakeholders in the cancer ecosystem, including providers, organizations for patient advocacy, agencies for advice, payers, and policy makers.
The Working Group, first assembled in 2019 by the LUNGevity Foundation, established 33 words relating to biomarker, genetic, and genomic testing that were used within the various cancer groups in patient education and clinical care in forming its recommendations. Multiple words were used in many cases to explain the same examination. In this sometimes ambiguous overlap, different research modalities, the source of testing samples, and the multiplicity of gene mutations currently recognizable by testing were contributing factors.
In the final analysis , three umbrella descriptor terms emerged as guidelines from the landmark exploration of the Working Group: "Biomarker testing" was selected as the preferred term for tests defining characteristics, targetable outcomes or other test outcomes from malignant tissue and blood; "genetic testing for an inherited mutation" and "genetic testing for inherited cancer"
5 days ago
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