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 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.

03/29/2026

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.

03/28/2026

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 CHEK2 can increase the risk for certain cancers. Early screening and regular checkups are key to staying a...
03/27/2026

A mutation in CHEK2 can increase the risk for certain cancers. Early screening and regular checkups are key to staying ahead. To learn more, read the full National Comprehensive Cancer Network (NCCN) guidelines by creating a FREE account at:
https://f.mtr.cool/drojqnrrhh

If you are a CHEK2 carrier (with or without cancer) and are interested in contributing to CHEK2 research, we welcome you to join our registry through which we have efforts to learn more about cancer risks and breast cancer characteristics, treatments, outcomes, and genomics. Visit https://f.mtr.cool/vxlfbqwjdi to enroll.

A new study shows similar rates of death from breast cancer when comparing 460 women who had a mastectomy with 745 women...
03/27/2026

A new study shows similar rates of death from breast cancer when comparing 460 women who had a mastectomy with 745 women who chose surveillance (screening).

Why is this important?
• For women choosing surveillance, these results are reassuring that survival is not likely to be compromised.
• As expected, breast cancer incidence is greatly lowered in the mastectomy group compared to the surveillance group. Specifically, mastectomy lowered breast cancer risk by 94% with a 2% rate of occult cancer after mastectomy.

Learn more at: https://ascopubs.org/doi/10.1200/JCO-25-00834

Reference: Gandhi, et al. J Clin Oncol. 2026:JCO2500834. PMID: 41637687.

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.

Inherited Cancer Misconception vs. Reality ⤵Misconception: Only people with a strong family history need genetic testing...
03/27/2026

Inherited Cancer Misconception vs. Reality ⤵

Misconception: Only people with a strong family history need genetic testing

Reality: Many people with inherited cancer mutations have minimal or no known family history due to small families, limited knowledge, or underreporting.

A new study among BRCA1/2 carriers without a prior breast cancer diagnosis, which included ICARE participants, showed th...
03/26/2026

A new study among BRCA1/2 carriers without a prior breast cancer diagnosis, which included ICARE participants, showed that HRT use did NOT lead to a significant increase in breast cancer risk and estrogen alone HRT may be protective.

Why is this important?
Women with BRCA1/2 mutations have high risk of ovarian cancer; thus, removing the ovaries at an early age is strongly recommended. HRT is an effective way to mitigate the health issues that go along with early menopause and this study shows that HRT can be used safely in this population.

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

Reference: Kotsopoulos, et al. J Natl Cancer Inst. 2025:djaf363. PMID: 41403285.

The National Institutes of Health (NIH) is:• the world's premier health research agency• the "crown jewel" of the federa...
03/26/2026

The National Institutes of Health (NIH) is:
• the world's premier health research agency
• the "crown jewel" of the federal government that drives scientific advances that save, extend, and enhance lives
• a vital contributor to the nation's economic development

Every $1 of research funding = $2.56 of economic activity

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!

WE’RE STRONGER TOGETHER.Inherited cancer affects families everywhere. By joining ICARE, you’re joining a community dedic...
03/26/2026

WE’RE STRONGER TOGETHER.
Inherited cancer affects families everywhere. By joining ICARE, you’re joining a community dedicated to cancer prevention, research, and hope. Sign up today at: https://redcap.link/ICAREconsent

03/25/2026

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 new study showed that more than 50% of adults do NOT know that alcohol raises risk of cancer. In fact, findings showed...
03/25/2026

A new study showed that more than 50% of adults do NOT know that alcohol raises risk of cancer. In fact, findings showed that among those who drink alcohol, 76% thought there was no effect on cancer risk.

Did you know that alcohol raises the risk of the following cancers?
• Head and neck
• Liver
• Breast
• Esophageal
• Stomach
• Colorectal
• Pancreatic

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

Reference: Domgue et al. JAMA Oncol. 2025. Online ahead of print. PMID: 41165698.

A new study among nearly 5,000 women with breast cancer, which included data from ICARE participants, compared sporadic ...
03/25/2026

A new study among nearly 5,000 women with breast cancer, which included data from ICARE participants, compared sporadic cases to those with germline pathogenic or likely pathogenic variants in BRCA1, BRCA2, PALB2, ATM, and CHEK2. We studied these tumors because we hypothesized that breast cancers from BRCA1, BRCA2, PALB2, ATM, and CHEK2 carriers form by distinct pathways, and better understanding these pathways could be important in predicting outcomes and drug responses.

What was found?
• BRCA1 HR+/HER2- breast cancers were significantly enriched for basal subtype, while CHEK2 cases had a higher prevalence of luminal A subtype
• Among HR+/HER2- breast cancers, BRCA1 cases were enriched for TP53 alterations, ATM cases with FGFR1 alterations, and BRCA2 cases with APC alterations
• Among HR+/HER2- breast cancers, BRCA2 cases were inversely associated with PIK3CA alterations and CHEK2 cases with TP53 alterations

Why is this important?
These findings may improve risk stratification and guide personalized treatment strategies.

Learn more at: https://pubmed.ncbi.nlm.nih.gov/41832987/

Reference: Yadav et al. J Natl Cancer Inst. 2026:djag070. Online ahead of print. PMID: 41832987.

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...
03/25/2026

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/msrqggptmg

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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.