ICARE - Inherited Cancer Registry

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 t

o 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.

September is Childhood Cancer Awareness Month - bringing awareness to pediatric cancer, the leading cause of death by di...
09/03/2026

September is Childhood Cancer Awareness Month - bringing awareness to pediatric cancer, the leading cause of death by disease for children under the age of 14.
Did you know that ~8.5% of kids with cancer may have an inherited cancer-predisposing gene mutation, including š˜›š˜—53 (which leads to Li-Fraumeni Syndrome)?

The European Society of Medical Oncology (ESMO) evaluated breast cancer susceptibility genes on the basis of cancer-rela...
09/03/2026

The European Society of Medical Oncology (ESMO) evaluated breast cancer susceptibility genes on the basis of cancer-related mortality to help guide which genes should be included in genetic testing for inherited breast cancer.

Those that may lead to patients living longer: BRCA1, BRCA2, PALB2, RAD51C, RAD51D, TP53 (for breast cancer diagnosed < age 40), and BRIP1 (possibly)

Other genes that might help estimate risks although uncertain they lead to patients living longer: CHEK2 and ATM

The group recommended strongly against inclusion of 'syndromic' genes such as STK11, PTEN, NF1, and CDH1

Learn more at: https://f.mtr.cool/if8svknfgk

Reference: Turnbull et al. Ann Oncol. 2025;36(8):853-865. PMID: 40523834.

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.

Cancer research benefits ALL populations! It is a gift to future generations of kids and grandkids. Remember, funding sc...
09/03/2026

Cancer research benefits ALL populations! It is a gift to future generations of kids and grandkids.

Remember, funding science will lead to better ways to find, prevent, and treat cancer. Share this post so we, the people, can spread the word about why cancer research is important!

Research is the foundation of hope.Your participation in ICARE fuels our mission to end the cycle of inherited cancer th...
09/03/2026

Research is the foundation of hope.
Your participation in ICARE fuels our mission to end the cycle of inherited cancer through research, education, and engagement. Together, we can rewrite the future.
Join our cause at: https://redcap.link/ICAREconsent

09/02/2026

Did you know that BRCA1/2 are amongst the most well-studied genes, yet most BRCA1/2 studies have been done in White populations? This means our knowledge about genes and risks comes primarily from White populations.

• Some research suggests that BRCA1/2 gene mutations may be more common in young Black women with breast cancer.
• Even though Asians represent many ancestry groups, the U.S. Census lumps them into ONE category. If we group Europeans into 1 ancestry group, we should group Asians into 10 ancestry groups.
• Compared to BRCA1/2 variants in Europeans, Indians have different variants ~50% of the time and Japanese individuals have different variants ~90% of the time. This makes sense because genetically Indians are closer to Europeans, while Japanese individuals are the most distant.

New research suggests exercise (moderate to vigorous) LOWERS risk of dying from various types of cancers.Learn more at: ...
09/02/2026

New research suggests exercise (moderate to vigorous) LOWERS risk of dying from various types of cancers.

Learn more at: https://f.mtr.cool/39wuu8o0gq

Reference: Rees-Punia et al. JAMA Netw Open. 2026;9(2):e2556971. PMID: 41701497.

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.

This month is Prostate Cancer Awareness Month - a time to help people learn about prostate cancer and support those who ...
09/02/2026

This month is Prostate Cancer Awareness Month - a time to help people learn about prostate cancer and support those who are affected. Did you know germline mutations in BRCA2, BRCA1, HOXB13, CHEK2, ATM, PALB2, and TP53 can increase the risk of prostate cancer?

Help raise awareness by sharing this post with your friends and family.

Healthcare providers play a vital role in helping eligible and interested patients find our registry. Swipe through to l...
09/02/2026

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/ueyadgcplw

New research shows that cancer risk after BRCA testing isn't one-size-fits-all—it depends on your specific results AND y...
09/01/2026

New research shows that cancer risk after BRCA testing isn't one-size-fits-all—it depends on your specific results AND your family history.

WHAT YOU NEED TO KNOW
If you carry a BRCA mutation:
• About 60-66% lifetime risk of breast cancer (vs. 12% in the general population)
• About 30-56% lifetime risk of ovarian cancer (vs. 1.5% in the general population)
• Family history matters: Having relatives with cancer further increases your personal risk

If your results are unclear or "negative":
• You may still have elevated breast cancer risk—don't assume zero risk
• Ovarian cancer risk stays close to the general population

If you're a true negative (i.e., there is a known family mutation, but you don't carry it), your cancer risk matches the general population.

The Bottom Line:
Your cancer risk isn't determined by a single test result. A personalized approach considering your family history, test results, and personal factors is essential for making informed screening and prevention decisions.
Talk to your doctor about what your specific results mean for your risk.

Learn more at: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2852275

Reference: Dossa, et al. JAMA Netw Open. 2026;9(7):e2626334. PMID: 42530926.

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.

A mutation in STK11 can increase the risk for certain cancers. Early screening and regular checkups are key to staying a...
09/01/2026

A mutation in STK11 can increase the risk for certain cancers. Early screening and regular checkups are key to staying ahead. 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/xua02oxgwf
https://f.mtr.cool/bdbr5z1oh2

If you tested positive for STK11, 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/3ij7lih8be to enroll and receive care updates as new guidelines come out.

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