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.

A study shows similar rates of death from breast cancer when comparing 460 women who had a mastectomy with 745 women who...
05/28/2026

A 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://f.mtr.cool/mnuhhiwsue

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.

The National Institutes of Health (NIH) is:• the world's premier health research agency• the "crown jewel" of the federa...
05/28/2026

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!

As National Cancer Research Month comes to an end, we would like to raise awareness about the incredible impact inherite...
05/28/2026

As National Cancer Research Month comes to an end, we would like to raise awareness about the incredible impact inherited cancer research has on the treatment and management of individuals at risk for inherited cancer.

Through participating in ICARE you can be a part of new discoveries in the field of inherited cancer research. For example, studies that used information from our participants have found that the risk of death is lowered among BRCA1/2 carriers with 1) MRI screening for breast cancer and 2) removal of both ovaries and fallopian tubes.

To learn more about participating in ICARE or if you'd like to enroll online, please visit https://inheritedcancer.net/

Share this post with your family and friends to help us raise awareness!

References:
Lubinski, et al. JAMA Oncol. 2024. PMID: 38421676.
Kotsopoulos, et al. JAMA Oncol. 2024. PMID: 38421677.

WE’RE STRONGER TOGETHER.Inherited cancer affects families everywhere. By joining ICARE, you’re joining a community dedic...
05/28/2026

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

05/27/2026

Why have genetic testing?

Genetic testing for inherited cancer can help guide care, including:
• Cancer treatment plans, such as chemotherapy, drugs, surgery, and radiation
• Cancer screening and prevention

Sharing genetic test results can also help family members understand their cancer risks.

A study among nearly 5,000 women with breast cancer, which included data from ICARE participants, compared sporadic case...
05/27/2026

A 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://f.mtr.cool/jdpsrjxtew

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...
05/27/2026

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/potniqkhrc

A new study among over 6,000 patients with low-risk pancreatic cysts found that 0.6% developed pancreatic cancer, with a...
05/26/2026

A new study among over 6,000 patients with low-risk pancreatic cysts found that 0.6% developed pancreatic cancer, with a cancer risk rate 13x higher than the general population.

What does this mean?
• Long-term follow-up appears important for these patients.
• If you have pancreatic cysts detected on imaging, don't assume "low-risk" means no risk. Ongoing follow up with your doctor would remain important, especially if you have a family history or a gene mutation that predisposes to pancreatic cancer.

Learn more at: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2849164

Reference: Mirzaian et al. JAMA Netw Open. 2026;9(5):e2613808. PMID: 42160052.

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.

EVERY HAND HELPS.When you join ICARE, you’re helping researchers end the cycle of inherited cancer. Let’s work together ...
05/25/2026

EVERY HAND HELPS.
When you join ICARE, you’re helping researchers end the cycle of inherited cancer. Let’s work together for a healthier tomorrow. Enroll today at: https://redcap.link/ICAREconsent

05/24/2026

If you have a history of breast cancer and a mutation in the PALB2 gene, you may be eligible to contribute to tumor genomics studies to help better understand inherited breast cancer in PALB2 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.

05/23/2026

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/

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