ICARE - Inherited Cancer Registry

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ICARE - Inherited Cancer Registry ICARE is a research study that aims to establish a registry of individuals interested in participating in inherited cancer research studies.

Our page is not a substitute for medical advice. ICARE is a questionnaire-based research study established in June 2010, representing a clinical-research-community partnership among medical practitioners, researchers, and members of the general population.Through ICARE, we hope to improve access to cancer genetics expertise for patients and healthcare providers. The common goal of our efforts is to improve the lives of patients and families at risk for inherited cancer susceptibility. This involves performing research in all aspects of familial cancer spanning from prevention and detection to treatment. There is no cost to participate in ICARE and communications can be conducted via phone, email, or mail. If inherited cancer has affected you or a family member, we encourage you to explore our website where you can learn more about ICARE and the services we offer, as well as join our registry.

10/21/2026

There are many different inherited breast cancer genes, and different genes lead to different levels of breast cancer risk:
• Some genes lead to high risks, defined as more than 4-fold risk of developing breast cancer: BRCA1, BRCA2, PALB2, TP53, PTEN, CDH1.
• While other lead to less high risks, in the range of 2-4 fold risk: CHEK2, ATM, BARD1, RAD51C, RAD51D.

A study shows that women with high grade serous ovarian cancer who remain cancer free for 7 years or more had nearly the...
10/21/2026

A study shows that women with high grade serous ovarian cancer who remain cancer free for 7 years or more had nearly the same mortality risk as the general U.S. population. Of note, most of the women in this study had stage 3 ovarian cancer.

Those with homologous repair deficiency (HRD) ovarian tumors (which is present in BRCA1/2 carriers) had substantially higher survival than those without HRD, both at 5 and 10 years out from their diagnosis:
• Event-Free Survival at 5 years (24.3% versus 14.7%) and 10 years (15.5% versus 8.9%)
• Overall Survival at 5 years (54.6% vs 34.9%) and 10 years (28.4% vs 16.8%)

This means that once an ovarian cancer survivor has reached the 7 year mark and is cancer free, their mortality rates are similar to that of the U.S. general population.

Learn more at https://f.mtr.cool/gxweqme11x

Reference: De Vitis et al. JCO Oncol Adv. 2026;3(1):e2500142. PMID: 41918500

Through ICARE, we aspire to share cancer-related information that may be of interest. If you have questions or clarifications, please direct them to your healthcare provider.

New NCCN Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate Cancer Guidelines (Version 1.2...
10/21/2026

New NCCN Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate Cancer Guidelines (Version 1.2027) were recently released on August 31st, 2026!

In these new guidelines the gene tables have been updated to summarize cancer risks, management, recommendations, and important considerations for many inherited cancer genes, including a new table added for SMARCA4. These updates can be found on pages GENE-A (1-19) in the new guidelines.

To access these new guidelines, create a free account at NCCN.org and visit the following link:https://www.nccn.org/professionals/physician_gls/pdf/genetics_bopp.pdf

Through ICARE, we aspire to share cancer-related information that may be of interest. If you have questions or clarifications, please direct them to your healthcare provider.

Healthcare providers play a vital role in helping eligible and interested patients find our registry. Swipe through to l...
10/21/2026

Healthcare providers play a vital role in helping eligible and interested patients find our registry. Swipe through to learn how referring to ICARE can benefit your patients, and how simple the referral process is.

If you have a patient who may be interested in contributing to inherited cancer research, consider referring them to ICARE by using our online referral form at: https://f.mtr.cool/w5icss9n2u

A mutation in BRIP1 can increase the risk for ovarian cancer. For age-specific guidance and more, check out the full Nat...
10/20/2026

A mutation in BRIP1 can increase the risk for ovarian cancer. For age-specific guidance and more, check out the full National Comprehensive Cancer Network (NCCN) guidelines by creating a FREE account at:
https://f.mtr.cool/cd0ti0jifc

If you tested positive for BRIP1, we’d love to hear from you in the comments – we know that information and guidelines are changing quickly. How do you keep up?

If you aren’t already enrolled in ICARE, visit https://f.mtr.cool/9p3n42vrkg to enroll and receive care updates as new guidelines come out.

New NCCN Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate Cancer Guidelines (Version 1.2...
10/20/2026

New NCCN Genetic/Familial High-Risk Assessment: Breast, Ovarian, Pancreatic, and Prostate Cancer Guidelines (Version 1.2027) were recently released on August 31st, 2026!

Updates included clarifying that genetic testing may be appropriate for some individuals with a close family member who meets testing criteria but has not undergone genetic testing. This update can be found on pages CRIT-2 and CRIT-6 in the new guidelines.

To access these new guidelines, create a free account at NCCN.org and visit the following link:https://www.nccn.org/professionals/physician_gls/pdf/genetics_bopp.pdf

Through ICARE, we aspire to share cancer-related information that may be of interest. If you have questions or clarifications, please direct them to your healthcare provider.

Want to make a difference in inherited cancer research?By participating in ICARE you can:• Be a part of new discoveries ...
10/19/2026

Want to make a difference in inherited cancer research?

By participating in ICARE you can:
• Be a part of new discoveries
• Get care updates personalized to you as new guidelines come out
• Find out about other studies you may be eligible for

To learn more about participating in ICARE or if you'd like to enroll online, visit https://redcap.link/ICAREconsent

October is 𝗕𝗿𝗲𝗮𝘀𝘁 𝗖𝗮𝗻𝗰𝗲𝗿 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵. Did you know that breast cancer risk can increase due to mutations in high pen...
10/19/2026

October is 𝗕𝗿𝗲𝗮𝘀𝘁 𝗖𝗮𝗻𝗰𝗲𝗿 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵. Did you know that breast cancer risk can increase due to mutations in high penetrance genes (such as BRCA1, BRCA2, PALB2, TP53, PTEN, and CDH1) and moderate penetrance genes (such as CHEK2, ATM, BARD1, RAD51C, and RAD51D)? Genetic testing for inherited cancer can help detect cancer early or prevent it altogether. Yet, most people with inherited cancer gene mutations do not know they have a mutation that can increase their risk for cancer.

If you already had testing and want more information about your results OR want information and guidance before getting tested, you may find a certified genetics professional near you by visiting NSGC's find a genetic counselor website at https://findageneticcounselor.nsgc.org/

Help spread awareness by sharing this post with friends and family!

10/17/2026

Unlock valuable resources for your health journey! 🌟

The National Comprehensive Cancer Network (NCCN) guides clinical practice by providing free access to their guidelines that are available to both patients and healthcare providers. To access the most recent version of cancer-related guidelines that are updated at least annually, create a free username and password at https://www.nccn.org/

Once you login, you may access the guidelines by going to the "Guidelines" tab in the top menu and selecting "Detection, Prevention, and Risk Reduction"
• Genetics/Familial Colorectal, Endometrial, Esophageal, and Gastric Cancer Guidelines are available at:https://www.nccn.org/professionals/physician_gls/pdf/genetics_ceeg.pdf
• Genetics/Familial Breast, Ovarian, Pancreatic, and Prostate Cancer Guidelines are available at:https://www.nccn.org/professionals/physician_gls/pdf/genetics_bopp.pdf
• To find information about inherited cancers across all NCCN guidelines, go to page SUMM-1 to view the "Summary of Genes and/or Syndromes Included/Mentioned in Other NCCN Guidelines" table, which includes links to other guidelines and genes/syndromes

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