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

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.

New poll results through the American Association for Cancer Research (AACR) showed that 9 in 10 Americans support feder...
02/19/2026

New poll results through the American Association for Cancer Research (AACR) showed that 9 in 10 Americans support federal funding for medical research.

According to the survey:
• 89% supported the federal government using taxpayer dollars to fund medical research
• 83% favored increasing funding for cancer research

As a result of federally funded research, between July 2024 to June 2025, 32 new therapeutics, tests, and devices to treat or detect cancer were approved by the FDA. Powerful stories of patients whose lives were transformed by these research-driven advances against cancer are included in the report.

Join the 9 in 10 Americans who believe in the transformative power of federally funded medical research by contacting your congressional representatives today and urging them to support NIH investments that drive progress for all patients.
To learn how to contact your representatives and see the full report, including the results of the poll, visit: https://f.mtr.cool/nubafmnhuc

Why have we not "cured" cancer?• Cancer is NOT just one disease... cancer consists of THOUSANDS of diseases• Let's make ...
02/19/2026

Why have we not "cured" cancer?
• Cancer is NOT just one disease... cancer consists of THOUSANDS of diseases
• Let's make sure we keep doing research to find new cures to treat the THOUSANDS of diseases that we call "cancer"
• Scientific research has led to curing many cancers that had no cure before and patients living longer because of new medicines to treat cancer.

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!

Want to make a difference in inherited cancer research?By participating in ICARE you can:• Be a part of new discoveries ...
02/19/2026

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

02/18/2026

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.

In observance of 𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗖𝗮𝗻𝗰𝗲𝗿 𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗠𝗼𝗻𝘁𝗵, we're shining a spotlight on the vital role of genetic testing in the...
02/18/2026

In observance of 𝗡𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗖𝗮𝗻𝗰𝗲𝗿 𝗣𝗿𝗲𝘃𝗲𝗻𝘁𝗶𝗼𝗻 𝗠𝗼𝗻𝘁𝗵, we're shining a spotlight on the vital role of genetic testing in the fight against inherited cancer 🌟 Did you know that genetic testing can be a powerful tool in preventing and detecting cancer early?

🧬 Genetic testing for inherited cancer can provide valuable insights into your personal cancer risk and influence screening and prevention strategies for you and your loved ones.

🧬 For example, individuals who test positive for an inherited gene mutation in BRCA1 and BRCA2 are at an increased risk for developing breast, ovarian, and prostate cancer. Those with inherited mutations in the Lynch Syndrome genes (MLH1, MSH2, MSH6, PMS2, and EPCAM) are at an increased risk for colon and other cancers.

This knowledge guides personalized screening recommendations, such as breast MRIs, mammograms, and colonoscopies, to help prevent cancer or detect it early. Knowledge is power! 💪

A new study evaluated breast cancer risks in BARD1 carriers based on family history and found that risks for breast canc...
02/18/2026

A new study evaluated breast cancer risks in BARD1 carriers based on family history and found that risks for breast cancer were higher in those with a family history and additional non-genetic risk factors were important modifiers of risk.

To learn more read the article at: https://f.mtr.cool/uqocndovgc

Reference: O'Brien, et al. JAMA Oncol. 2025. Online ahead of print. PMID: 41066089.

A mutation in CDKN2A can increase the risk for certain cancers. Early screening and regular checkups are key to staying ...
02/17/2026

A mutation in CDKN2A can increase the risk for certain cancers. Early screening and regular checkups are key to staying ahead. To learn more, check out the full National Comprehensive Cancer Network (NCCN) guidelines by creating a FREE account at:
https://f.mtr.cool/ywkpthdaki

If you tested positive for CDKN2A, 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/czvxcddkxn to enroll and receive care updates as new guidelines come out.

JNCCN just released an NCCN Guidelines insights article in the February issue with insights on prostate cancer screening...
02/17/2026

JNCCN just released an NCCN Guidelines insights article in the February issue with insights on prostate cancer screening, pancreatic cancer screening, and testing for non-epithelial ovarian cancer. Read it now at https://jnccn.org/view/journals/jnccn/24/2/article-p2.xml

Reference: Cheng, et al. J Natl Compr Cancer Netw. 2026:24(2):2-10. PMID: 41671423.

🌟 We love hearing from you! 🌟Your voice matters, and we’re so thankful for each and every one of you. Together, we’re ma...
02/16/2026

🌟 We love hearing from you! 🌟
Your voice matters, and we’re so thankful for each and every one of you. Together, we’re making strides toward a brighter future for those affected by inherited cancer.

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

🔗 Tag a friend who might want to join the journey!

02/15/2026

If you have a history of breast cancer and a mutation in the BRCA1 and/or BRCA2 genes, you may be eligible to contribute to tumor genomics studies to help better understand inherited breast cancer in BRCA1/2 carriers. Through the Inherited Cancer Registry (ICARE), we are studying:
- breast cancer characteristics
- factors associated with outcomes, including treatments
- tumor genomics to better understand pathways to tumor development

With your help, we hope that one day our research may lead to new or refined treatment strategies! To learn more about participating in ICARE or if you'd like to enroll online, please visit https://redcap.link/ICAREconsent. Once you are enrolled into ICARE, our research team will assess your eligibility for this and other focused research efforts.

02/14/2026

Curious about inherited cancer and the latest breakthroughs? Look no further than the ICARE YouTube channel! 🎥 Join genetics experts as they dive into discussions on important topics like updates to NCCN cancer risk management guidelines and insights into specific inherited cancer genes. Don't miss out on some of our top-viewed videos that cover topics like the management of CHEK2 carriers, long telomere syndromes, care for gender-diverse individuals, and the most recent NCCN guideline updates. Visit our channel and subscribe today at: https://www.youtube.com/

A mutation in EPCAM can increase the risk for certain cancers. Early screening and regular checkups are key to staying a...
02/13/2026

A mutation in EPCAM can increase the risk for certain cancers. Early screening and regular checkups are key to staying ahead. To learn more, check out the full National Comprehensive Cancer Network (NCCN) guidelines by creating a FREE account at:
https://f.mtr.cool/ywrdxrlccd
https://f.mtr.cool/hdezwdwpzs

If you tested positive for EPCAM, 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/pijureyiwd to enroll and receive care updates as new guidelines come out.

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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.