New NCCN Patient Resource Shares Latest Understanding of Genetic Testing to Guide Patient Decision-Making
NCCN has published a new resource to inform people about the latest recommendations around hereditary and familial cancer risk. This essential guide is based on the latest evidence and expert consensus in the rapidly advancing field of cancer genetics. It provides guidance on how best to assess, and test for, inherited genetic mutations that can increase the risk of cancer, and presents this information in a straightforward, plainspoken manner.
“No other landscape in medicine has changed as drastically as the field of clinical genetics,” said Mary B. Daly, MD, PhD, FACP, Fox Chase Cancer Center, and Chair of the NCCN Guidelines Panel for Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate. “The changes have been facilitated by the work of the Human Genome Project but have gone way beyond its scope. Advances in technology have been a major driver of the explosion of knowledge in genetics, now allowing us to sequence the entire human genome in a short period of time and at a fraction of the cost of previous years. This has led to a better understanding of the natural history of cancer, the ability to assess genetic risk for cancer across populations, the development of clinical management strategies to reduce cancer risk, the development of novel therapeutic agents which target genetic alterations, and to improved education of patients and providers about genetic risk.”
“NCCN brings together national experts in hereditary cancer to develop consensus guidelines based on the latest research,” said Susan Friedman, DVM, Executive Director, FORCE: Facing Our Risk of Cancer Empowered, who serves as a patient advocate on the NCCN Guidelines Panel for Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate. “FORCE and the entire hereditary cancer community rely on the NCCN Guidelines for the most up-to-date and relevant information. Hereditary cancer is hard enough to navigate, so we are thankful for patient-friendly information to help inform the decision-making process.”
“After our mother and aunt were both diagnosed with breast cancer, my sister and I sought genetic testing that revealed that all of us, except my sister, carried the BRCA2 mutation,” said Denise Portner, a breast cancer survivor and member of the NCCN Foundation Board of Directors. “Had I not known my genetic status, I would not have had the MRI screening that caught my breast cancer as early as it did. Genetic testing is a vital tool in enabling individuals to be proactive in their health care to achieve the best possible outcomes. Having a patient guide that explains the testing process, what clinicians test for, and who should seek testing is an invaluable resource.”
“It’s very important for everyone to understand their cancer risks based on their personal or family history since their personal risk level may necessitate earlier, more frequent, and/or more intensive cancer surveillance,” added Heather Hampel, MS, Certified Genetics Counselor, Associate Director, Division of Clinical Cancer Genomics Professor, Department of Medical Oncology & Therapeutics Research, City of Hope. “This is the best way to ensure that you are doing everything you can to prevent cancer or catch it early when treatment has the best outcome. You can find a local cancer genetic counselor at findageneticcounselor.org if you would like a personalized cancer risk assessment. This often includes genetic testing to determine if you have a hereditary cancer susceptibility running in your family.”
The library of NCCN Guidelines for Patients includes more than 70 free books in multiple languages, featuring easy-to-understand information about prevention, screening, diagnosis, treatment, and supportive care for nearly every type of cancer. They are based on the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines)—which are continuously updated, evidence-based, expert consensus-driven recommendations that guide cancer care teams worldwide.
NCCN’s patient guidelines have earned numerous awards as high-quality, trustworthy sources of patient education on cancer. They are widely recognized for their role in helping to empower people with cancer to make informed treatment decisions that are best for them. Visit NCCN.org/patientresources to learn more about all of the different resources for people with cancer and their caregivers available from NCCN and the NCCN Foundation.
NCCN Joins International Meeting to Improve Cancer Care in the Middle East and North Africa Region
On January 10, 2025, NCCN participated in a 2-day meeting at the Middle East North Africa (MENA)-NCCN Regional Coordinating Center. The MENA-NCCN Regional Coordinating Center is supported by the Ministry of National Guard Health Affairs in Riyadh, Saudi Arabia. That office—directed by Dr. Kanan Al Shammari—has been working closely with NCCN to ensure quality guideline adaptation and knowledge exchange since 2014.
During the international meeting, experts from across the region presented new and updated NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines): MENA Editions, and selected topics highlighting cancer advances, challenges, and opportunities in the MENA region. The NCCN Guidelines provide evidence-based expert consensus-driven recommendations for cancer prevention, screening, treatment, and supportive care. NCCN Guidelines: MENA Editions tailor those best practices for unique local/regional circumstances.
“This gathering represents an important opportunity to continue integrating global cancer care standards with regional expertise, ensuring more equitable and effective treatment outcomes for people in the MENA region,” said Dr. Al Shammari. “NCCN has a distinguished legacy of improving cancer care globally. We are pleased to work together to further the impact of medical advances so people with cancer and their loved ones can live better lives throughout our area.”
Specific NCCN Guidelines: MENA Editions that will be reviewed include those covering blood cancers, breast cancer, colon cancer, liver cancer, non–small cell lung cancer, prostate cancer, genetics and hereditary risk for breast, ovarian, pancreatic, and prostate cancers, and palliative care.
“We are so proud of this ongoing relationship with cancer care experts across the MENA Region,” stated Crystal S. Denlinger, MD, Chief Executive Officer, NCCN, who spoke during a session on the History of NCCN and its Global Impact. “Over the years, we have published more than a dozen NCCN Guidelines specifically for the MENA region, which are applicable to approximately 65% of all adult cancer incidence here. That represents over 2,000 pages of clinical content being updated every 2 years. We are honored to be able to work together to empower the MENA oncology community to deliver high-quality cancer care, enhance scientific communication, and improve access for patients.”
The NCCN Guidelines: MENA Editions offer color-coded guidance for health care providers on how best to care for people with cancer. Text in black represents current global recommendations, while italicized blue text indicates appropriate and feasible regional modifications—as determined by in-country experts. Approaches that are not currently feasible are marked with grey strikethrough text.
The NCCN Global Program also features NCCN Guidelines that have been translated more than 270 times across 50+ different languages. NCCN Harmonized Guidelines and NCCN Framework for Resource Stratification (NCCN Framework) supply additional recommendations for defining appropriate treatment for differing resource levels.
NCCN also publishes NCCN Guidelines for Patients; to provide clinical recommendations in non-medical terms for patients and caregivers. They are available for free at NCCN.org/patients—thanks to funding from the NCCN Foundation—and have been translated into multiple languages, including Arabic.
Learn more about NCCN’s ongoing work to define and advance cancer care around the world at NCCN.org/global.
