WASHINGTON, July 7, 2020 /PRNewswire/ --A LUNGevity Foundation-led consortium of 41 leading patient advocacy organizations, professional societies, and industry partners has published a white paper detailing recommendations for the use of testing terminology in precision medicine for patient education throughout the cancer community. Use of consistent language will significantly improve patient awareness and understanding of potentially lifesaving testing options available for both new cancer diagnoses and progression or recurrence of disease.
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 (Working Group) indicates that language disparity is a primary obstacle to patient communication with providers about testing for their specific cancer type. Further, development of consistent language can increase patient understanding and communication, facilitate shared decision making, support value-based care, and assure concordance in policy development.
The Working Group is a consortium of 20 cancer patient advocacy groups representing solid tumor and hematologic malignancies, three professional societies, and 18 pharmaceutical and diagnostic companies and testing laboratories. Over the course of many years, multiple activities, led by numerous individual patient advocacy organizations and professional societies, have developed the groundwork for this effort. The Working Group has launched a multi-faceted dissemination and communications effort to ensure that its recommendations and supporting materials are widely available among all key stakeholders within the cancer ecosystem, including providers, patient advocacy organizations, guidelines agencies, payers, and policymakers.
In developing its recommendations, the Working Group, first convened in 2019 by LUNGevity Foundation, identified 33 terms related to biomarker, genetic, and genomic testing that were being used in patient education and clinical care within the different cancer communities. In many cases, multiple terms were used to describe the same test. Various testing modalities, the source of testing samples, and the multiplicity of gene mutations currently identifiable by testing were contributing factors in this often-confusing overlap.
In the final analysis, three umbrella descriptor terms emerged as recommendations from the Working Group's milestone exploration: "Biomarker testing"was selected as the preferred term for tests that identify characteristics, targetable findings, or other test results originating from malignant tissue and blood; "genetic testing for an inherited mutation" and "genetic testing for inherited cancer risk" were selected as consensus terms for tests used to identify germline (inherited) mutations.
"Far too many patients across all cancer types are still missing out on essential tests for biomarkers and inherited mutations indicating cancer risk," said Michelle Shiller, DO, AP/CP, MGP, Co-Medical Director of Genetics at Baylor Sammons Cancer Center and Staff Pathologist at Baylor University Medical Center. "With rates of biomarker testing and genetic testing for an inherited mutation at sub-optimal levels for numerous patient populations, patients are not benefiting from biomarker-directed care or not learning about their inherited cancer risk. Confusion around testing terms is a driving factor in this undertesting and ultimately has a detrimental impact on patient care."
Adds Nikki Martin, Director of Precision Medicine Initiatives at LUNGevity Foundation, "When someone is diagnosed with cancer, they're swept into a whirlwind of bewildering words and complex, pressing decisions. Our Working Group's goal is to help calm that storm of confusion with clear and consistent language that facilitates communication and medical decision-making. A unified voice and message from providers, industry, and the patient advocacy community about testing is absolutely vital to optimal cancer care."
An abstract on the Working Group's recommendations was published in May 2020 as part of the American Society of Clinical Oncology (ASCO) Annual Meeting Virtual Library.
The White Paper can be viewed in its entirety atwww.CommonCancerTestingTerminology.org.
Working Groupparticipating organizations include:
Patient Advocacy: CancerCare; Cancer Support Community;The CholangiocarcinomaFoundation;Clearity Foundation; Colorectal Cancer Alliance; Fight CRC; FORCE(Facing Our Risk of Cancer Empowered); International Cancer Advocacy Network; Leukemia & Lymphoma Society; The Life Raft Group; Lymphoma Research Foundation; Living Beyond Breast Cancer; Lung Cancer Action Network (LungCan); LUNGevity Foundation; National Lung Cancer Roundtable(American Cancer Society); PanCAN; Personalized Medicine Coalition; Prostate Cancer Foundation; Ovarian Cancer Research Alliance (OCRA); Sharsheret(The Jewish Breast & Ovarian Cancer Community);and Susan G. Komen.
Professional Societies: Association of Community Cancer Centers(ACCC);Association for Molecular Pathology(AMP); and National Society of Genetic Counselors(NSGC).
Industry Partners: Abbvie; Amgen;AstraZeneca; Blueprint Medicines; Boehringer Ingelheim; Bristol-Myers Squibb; Caris Life Sciences; Eli Lilly and Company; Foundation Medicine; Genentech;GlaxoSmithKline (GSK); Novartis; Myriad Women's Health; NeoGenomics; Pfizer; Personal Genome Diagnostics (PGDx); andThermo Fisher Scientific.
About LUNGevity Foundation
LUNGevity Foundation is the nation's leading lung cancer organization focused on improving outcomes for people with lung cancer through research, education, policy initiatives, and support and engagement for patients, survivors, and caregivers. LUNGevity seeks to make an immediate impact on quality of life and survivorship for everyone touched by the diseasewhile promoting health equity by addressing disparities throughout the care continuum. LUNGevity works tirelessly to advance research into early detection and more effective treatments, provide information and educational tools to empower patients and their caregivers, promote impactful public policy initiatives, and amplify the patient voice through research and engagement. The organization provides an active community for patients and survivorsand those who help them live better and longer lives.
Comprehensive resources include a medically vetted and patient-centric website, a toll-free HELPLine for support, the International Lung Cancer Survivorship Conference, and an easy-to-use Clinical Trial Finder, among other tools. All of these programs are to achieve our visiona world where no one dies of lung cancer. LUNGevity Foundation is proud to be a four-star Charity Navigator organization.
About Lung Cancer in the US
Please visit http://www.LUNGevity.orgto learn more.
View original content to download multimedia:http://www.prnewswire.com/news-releases/pan-cancer-consortium-moves-to-clarify-and-promote-consistent-use-of-common-terms-for-biomarker-and-germline-genetic-testing-301088874.html
SOURCE LUNGevity Foundation
Original post:
Pan-Cancer Consortium Moves to Clarify and Promote Consistent Use of Common Terms for Biomarker and Germline Genetic Testing - BioSpace
- Episode 174: Rudy Tanzi talks about genetics, aging and the hallmarks of Alzheimers - IHMC - October 26th, 2024 [October 26th, 2024]
- Ocuphire and Opus Genetics merge to develop IRD gene therapy - Pharmaceutical Technology - October 26th, 2024 [October 26th, 2024]
- The RD Fund Announces Ocuphire Pharma's Acquisition of Opus Genetics - PR Newswire - October 26th, 2024 [October 26th, 2024]
- The RD Fund Announces Ocuphire Pharma's Acquisition of Opus Genetics - WV News - October 26th, 2024 [October 26th, 2024]
- Faculty of Science | Protecting Canadas number one crop through genetics - UM Today - October 26th, 2024 [October 26th, 2024]
- Ocuphire and Opus Genetics merge to develop IRD gene therapy - Yahoo Finance - October 26th, 2024 [October 26th, 2024]
- Opinion | Fascinated by genetics? Where are the peas Trump made to fornicate? - The Washington Post - October 13th, 2024 [October 13th, 2024]
- Dietary restriction can extend lifespan but genetics matters more - Nature.com - October 13th, 2024 [October 13th, 2024]
- 'They have much stronger players' - Bangladesh assistant coach bizarrely blames 'genetics' for lack of six hitters in the team - Sporting News - October 13th, 2024 [October 13th, 2024]
- Medical Moment: Genetics and breast cancer with USA Health Genetic Counselor Cassie Gurganus - AOL - October 13th, 2024 [October 13th, 2024]
- Myriad Genetics Announces Five Research Collaborations to Study the Use of MRD Testing in Breast Cancer - Yahoo Finance - October 13th, 2024 [October 13th, 2024]
- An ideologically-based and misleading critique of how modern genetics is taught - Why Evolution Is True - October 13th, 2024 [October 13th, 2024]
- 2024 Mercedes-AMG C63 Review: Bold But Beholden to Its Genetics - Newsweek - October 2nd, 2024 [October 2nd, 2024]
- Myriad Genetics Announces Third Patent Granted for Molecular Residual Disease (MRD) with Early Priority Date - GlobeNewswire - October 2nd, 2024 [October 2nd, 2024]
- Digbi Health Launches an SEC-regulated Offering, Giving Millions the Opportunity to Invest in Groundbreaking Genetics and Gut Microbiome-based Care... - October 2nd, 2024 [October 2nd, 2024]
- The role of genetics in depression | Second Opinion - KCRW - September 23rd, 2024 [September 23rd, 2024]
- Tilapia genetics company Spring Genetics teams up with UK data firm to improve fish welfare - SeafoodSource - September 23rd, 2024 [September 23rd, 2024]
- Picky eating in kids is mostly due to genetics, study says - Motherly Inc. - September 23rd, 2024 [September 23rd, 2024]
- Research Shows That Fussy Eating In Children Is Mainly Influenced By Genetics - RTTNews - September 23rd, 2024 [September 23rd, 2024]
- Genetics colloquium: Chris Hittinger on the genomic making of metabolic niche breadth Sep. 11 - University of WisconsinMadison - September 15th, 2024 [September 15th, 2024]
- NIH Recognizes Yales Expertise in the Genetics of Rare Diseases - Yale School of Medicine - September 15th, 2024 [September 15th, 2024]
- SOPHiA GENETICS and AstraZeneca Collaborate to Further Expand Global Access to Liquid Biopsy Testing - PR Newswire - September 15th, 2024 [September 15th, 2024]
- Medicines race dilemma: What science says about genetics and health [PODCAST] - Kevin MD - September 15th, 2024 [September 15th, 2024]
- Researchers want to unlock genetics of the worlds tiniest animals - Popular Science - September 15th, 2024 [September 15th, 2024]
- Sophia Genetics and AstraZeneca collaborate to expand liquid biopsy test rollout - Medical Device Network - September 15th, 2024 [September 15th, 2024]
- From farm to future: Technology in genetics - National Hog Farmer - September 2nd, 2024 [September 2nd, 2024]
- Editorial: Plant biotechnology and genetics for sustainable agriculture and global food security - Frontiers - September 2nd, 2024 [September 2nd, 2024]
- NSF Grant Brings Genetics Opportunities to Students in Alabama - Government Technology - September 2nd, 2024 [September 2nd, 2024]
- SBUs Ben Luft brings Lyme expertise to seminal paper on bacterial genetics and evolution - TBR News Media - September 2nd, 2024 [September 2nd, 2024]
- SOPHiA GENETICS to Present at the 22nd Annual Morgan Stanley Healthcare Conference and 9th Annual TD Cowen FutureHealth Conference - PR Newswire - September 2nd, 2024 [September 2nd, 2024]
- Singapores National Precision Medicine (NPM) Programme Engages Oxford Nanopore to Advance Understanding of the Genetics of Singapores Multi-Ethnic... - August 5th, 2024 [August 5th, 2024]
- Fulgent Genetics Second Quarter 2024 Earnings: Beats Expectations - Yahoo Finance - August 5th, 2024 [August 5th, 2024]
- Stopped clinical trials give evidence for the value of genetics - Nature.com - August 5th, 2024 [August 5th, 2024]
- What is DSD? Sex genetics and Olympic boxing controversy - Washington Examiner - August 5th, 2024 [August 5th, 2024]
- Fulgent Genetics Q2: Core Revenue Grows, but Profitability Is Still an Issue - The Motley Fool - August 5th, 2024 [August 5th, 2024]
- Viewpoint: Challenging yet another scientifically silly article claiming Black domination of sprinting and long distance running has nothing to do... - August 5th, 2024 [August 5th, 2024]
- Texas Company Trying To Resurrect Woolly Mammoths To Improve Genetics Of Bison - Cowboy State Daily - August 5th, 2024 [August 5th, 2024]
- Genetics confirms Berbers reached North Africa over 20,000 years ago; Arabs came in 7th Century CE - Down To Earth Magazine - August 5th, 2024 [August 5th, 2024]
- Unlocking plant genetics with telomere-to-telomere genome assemblies - Nature.com - July 26th, 2024 [July 26th, 2024]
- Carlo Ancelotti claims Jude Bellingham's 'genetics' are main reason behind Real Madrid & England superstar's meteoric rise to the top - Goal.com - July 26th, 2024 [July 26th, 2024]
- Genetics-based modeling estimates Idaho's wolf population was 1,150 in summer 2023 - Idaho Fish and Game - July 26th, 2024 [July 26th, 2024]
- Lung Cancer Research Foundation Joins Lung Cancer Advocacy Organizations and 23andMe to Launch Lung Cancer Genetics Study to Advance Research - PR... - July 26th, 2024 [July 26th, 2024]
- Fulgent Genetics (FLGT) Scheduled to Post Earnings on Friday - Defense World - July 26th, 2024 [July 26th, 2024]
- SOPHIA GENETICS Announces Expanded Relationship with Canada-Based OncoHelix - Financial Times - July 26th, 2024 [July 26th, 2024]
- LG Household & Health Care publishes research into the genetics of skin tone - GlobalCosmeticsNews - July 26th, 2024 [July 26th, 2024]
- Estonians gave their DNA to science now they're learning their genetic secrets - Nature.com - June 27th, 2024 [June 27th, 2024]
- Genetic clues to depression revealed in large study - PsyPost - June 27th, 2024 [June 27th, 2024]
- Move Over, Genghis Khan. Many Other Men Left Huge Genetic Legacies - Smithsonian Magazine - June 27th, 2024 [June 27th, 2024]
- 3X4 Genetics Selected as Partner for Preeminent Cancer Research and Treatment Nonprofit, The Metabolic Terrain ... - BioSpace - June 27th, 2024 [June 27th, 2024]
- NIFA Invests $6M in Animal Breeding, Genetics and Genomics | NIFA - National Institute of Food and Agriculture - June 27th, 2024 [June 27th, 2024]
- Arbel Harpak: Pursuing the Next Frontier in Genetics | Dell Medical School - Dell Medical School - June 27th, 2024 [June 27th, 2024]
- Coffee habits are partly linked to genetics, UC San Diego researchers say - NBC San Diego - June 27th, 2024 [June 27th, 2024]
- Advanced genetic tools help researchers ID new neurodevelopmental syndrome - Yale News - June 27th, 2024 [June 27th, 2024]
- Nutritious diet may protect against type 2 diabetes, regardless of genetics - News-Medical.Net - June 27th, 2024 [June 27th, 2024]
- Genome-wide association study identifies host genetic variants influencing oral microbiota diversity and metabolic ... - Nature.com - June 27th, 2024 [June 27th, 2024]
- Unlock the Secrets of Your DNA with Advanced Genetic Testing - North Forty News - June 27th, 2024 [June 27th, 2024]
- Modern and precise: Using gene editing to change the blueprint of an organism - Beef Magazine - June 27th, 2024 [June 27th, 2024]
- The 'gene deserts' unravelling the mysteries of disease - BBC.com - June 27th, 2024 [June 27th, 2024]
- UGA plant geneticists are tackling the climate crisis - Longview News-Journal - June 27th, 2024 [June 27th, 2024]
- Genetic Tests for Predicting Clopidogrel Response Gain Traction: AHA - TCTMD - June 27th, 2024 [June 27th, 2024]
- Bringing Gene Therapy to the Brain - The Scientist - June 27th, 2024 [June 27th, 2024]
- The importance of the paradise fish in evolutionary and behavioral genetics research - Phys.org - June 9th, 2024 [June 9th, 2024]
- What Is Fulgent Genetics, Inc.'s (NASDAQ:FLGT) Share Price Doing? - Yahoo Finance - June 9th, 2024 [June 9th, 2024]
- UW initiative aims to bring together social sciences and genetics - Wisbusiness.com - June 9th, 2024 [June 9th, 2024]
- Women have a higher genetic risk for PTSD, according to study by VCU and Swedish researchers - VCU News - June 9th, 2024 [June 9th, 2024]
- Genetics study points to potential treatments for restless leg syndrome - University of Cambridge news - June 9th, 2024 [June 9th, 2024]
- deCODE genetics: The rate, nature and transmission of mitochondrial DNA mutations in humans - PR Newswire - June 9th, 2024 [June 9th, 2024]
- Genetic association mapping leveraging Gaussian processes | Journal of Human Genetics - Nature.com - June 9th, 2024 [June 9th, 2024]
- Minimally destructive hDNA extraction method for retrospective genetics of pinned historical Lepidoptera specimens ... - Nature.com - June 9th, 2024 [June 9th, 2024]
- Restless legs syndrome tied to 140 'hotspots' in the genome - Livescience.com - June 9th, 2024 [June 9th, 2024]
- Paired tumor-germline testing can enhance patient carewith guidance from genetics specialists - The Cancer Letter - June 9th, 2024 [June 9th, 2024]
- Improved functional mapping of complex trait heritability with GSA-MiXeR implicates biologically specific gene sets - Nature.com - June 9th, 2024 [June 9th, 2024]
- Genetic Risk Score Revolutionizes TNBC Prediction in Black Women - Targeted Oncology - June 9th, 2024 [June 9th, 2024]
- Gene variants and breast cancer risk in Black women - National Institutes of Health (NIH) (.gov) - June 9th, 2024 [June 9th, 2024]
- GSA-MiXeR: A powerful tool to improve our understanding of heritable traits and diseases - News-Medical.Net - June 9th, 2024 [June 9th, 2024]
- Understanding the effect genetics have on Alzheimer's - Buffalo News - June 9th, 2024 [June 9th, 2024]
- 'Fossil viruses' embedded in the human genome linked to psychiatric disorders - Livescience.com - June 9th, 2024 [June 9th, 2024]
- Louisiana Sports Hall of Fame Profile: Ardoin's genetics provided gift for writing, and his versatility made him legendary - crescentcitysports.com - June 9th, 2024 [June 9th, 2024]
- Genes Link Sleep Patterns to Autism and Bipolar Disorder - Neuroscience News - June 9th, 2024 [June 9th, 2024]
- Tilapia genetics: a comparative trial between two strains in Brazil - The Fish Site - June 1st, 2024 [June 1st, 2024]