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.

A mutation in PTEN can increase the risk for certain cancers. Early screening and regular checkups are key to staying ah...
11/14/2025

A mutation in PTEN 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/kolsbvupek
https://f.mtr.cool/ljtywuncxa

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

Inherited Cancer Misconception vs. Reality ⤵Misconception: Genetic counseling isn't necessary — the test results are sel...
11/14/2025

Inherited Cancer Misconception vs. Reality ⤵

Misconception: Genetic counseling isn't necessary — the test results are self-explanatory.

Reality: Variants of uncertain significance, different risk levels, and family implications all require expert explanation. It's important to speak to a health professional knowledgeable and familiar with interpreting and explaining test results.

Visit our YouTube channel at the link below to watch an exciting presentation from yesterday's ICARE Genetics Case Confe...
11/14/2025

Visit our YouTube channel at the link below to watch an exciting presentation from yesterday's ICARE Genetics Case Conference, during which Payal Khincha, MBBS, MSHS discusses Li-Fraumeni Syndrome 🧬 ⤸
https://youtu.be/lNjJJCcLiQY

Excerpt from the November 2025 ICARE Genetics Case Conference with guest expert Dr. Payal Khincha from the National Cancer Institute discussing the upcoming ...

11/14/2025

A new study reports that risks for breast cancer in BRCA2 carriers were higher in those with a family history, while additional non-genetic risk factors seemed to minimally modify risks.

To learn more read the article at the link in our bio!

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

A new study reports that risks for breast cancer in BRCA2 carriers were higher in those with a family history, while add...
11/14/2025

A new study reports that risks for breast cancer in BRCA2 carriers were higher in those with a family history, while additional non-genetic risk factors seemed to minimally modify risks.

To learn more read the article at: https://jamanetwork.com/journals/jamaoncology/article-abstract/2839917

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

Investing in science lowers the burden of cancer for future cancer patients, including our children and grandchildren. R...
11/13/2025

Investing in science lowers the burden of cancer for future cancer patients, including our children and grandchildren.

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!

Learn more by reading the full article at: https://f.mtr.cool/axxqrewmvpReference: Shevach et al. JAMA Oncol. 2025:e2528...
11/13/2025

Learn more by reading the full article at: https://f.mtr.cool/axxqrewmvp

Reference: Shevach et al. JAMA Oncol. 2025:e252879. PMID: 40875208.

Did you know that by participating in ICARE you may be able to contribute to other research efforts?For example, ICARE h...
11/13/2025

Did you know that by participating in ICARE you may be able to contribute to other research efforts?

For example, ICARE helps facilitate:
• Genomic studies on tumor samples to better understand tumor development
• Other focused research efforts to help figure out cancer risks and improve outcomes in cancer patients

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

In recognition of 𝗣𝗮𝗻𝗰𝗿𝗲𝗮𝘁𝗶𝗰 𝗖𝗮𝗻𝗰𝗲𝗿 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵, let's raise awareness about genes that increase the risk for pancre...
11/13/2025

In recognition of 𝗣𝗮𝗻𝗰𝗿𝗲𝗮𝘁𝗶𝗰 𝗖𝗮𝗻𝗰𝗲𝗿 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗠𝗼𝗻𝘁𝗵, let's raise awareness about genes that increase the risk for pancreatic cancer, including 𝘚𝘛𝘒11, 𝘊𝘋𝘒𝘕2𝘈, 𝘉𝘙𝘊𝘈1/2, 𝘈𝘛𝘔, and the Lynch Syndrome genes.

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've already had genetic testing for inherited cancer 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/

Follow along to stay informed about inherited cancer risk, early detection, and preventative measures!

11/12/2025

Triple-negative breast cancers, which do not have estrogen, progesterone, or HER2 receptors, can be more serious and difficult to treat. Inherited breast cancer gene mutations, like BRCA1/2, are more common among this type of breast cancer - which is why it is important for those with triple-negative breast cancer to consider getting genetic testing that could help guide their cancer treatment 🧬👩‍⚕️

Black populations from Africa, the Caribbean, and the United States are more commonly diagnosed with triple-negative breast cancer, which may contribute to their worse breast cancer outcomes. However, there is now emerging data to suggest that triple-negative breast cancer may be more common in other non-European populations, such as India.

These types of studies highlight the differences across populations in developing more serious forms of breast cancer, as well as the importance of studying ALL populations so that everyone can have the chance to benefit from genomic advances.

11/12/2025

A new study evaluated breast cancer risks in RAD51C carriers based on family history and found that risks for breast cancer were higher in those with a family history, but only at later stages. Additional non-genetic risk factors were also important modifiers of risk.

To learn more read the article at the link in our bio!

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

Big news for the NF1 community: Selumetinib is now FDA-approved for inoperable plexiform neurofibromas. A major step for...
11/12/2025

Big news for the NF1 community: Selumetinib is now FDA-approved for inoperable plexiform neurofibromas. A major step forward in treatment options for Neurofibromatosis Type 1!

🔗 Read the full FDA announcement at: https://f.mtr.cool/jagbgugaab

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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.