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.

12/27/2025

Did you know that inherited cancer gene mutations in TP53, RB1, NF1, APC, KIT, and PDGFR can raise the risk for certain sarcomas? In fact, one in ten people with osteosarcoma have an inherited cancer risk gene mutation. If you are a sarcoma patient, you may want to consider genetic testing.

We ask that you also consider joining our CAUSAL study through which we trying to learn more about sarcoma patients. No travel to our center is needed, and everything can be done online. Participating in this study involves taking surveys, monitoring your physical activity with a free Fitbit, free genetic testing for inherited cancer, and free tumor testing. Your participation could help develop new ways to improve cancer treatment and quality of life as well as to learn more about sarcoma causes and prevention.

To learn more, visit https://tinyurl.com/CAUSALstudy

A mutation in BARD1 can increase the risk for breast cancer. Early screening and regular checkups are key to staying ahe...
12/26/2025

A mutation in BARD1 can increase the risk for breast cancer. 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/ckrztewxxz

If you tested positive for BARD1, 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/ggjmhhxkes to enroll and receive care updates as new guidelines come out.

Inherited Cancer Misconception vs. Reality ⤵Misconception: Tumor testing and inherited testing are the same.Reality: Tum...
12/26/2025

Inherited Cancer Misconception vs. Reality ⤵

Misconception: Tumor testing and inherited testing are the same.

Reality: Tumor testing looks for mutations in cancer cells; inherited (germline) testing looks for mutations in all cells, which can be passed to offspring.

According to results of the Colorectal Adenoma/Carcinoma Prevention Program 3 (CaPP3) study presented at the Internation...
12/25/2025

According to results of the Colorectal Adenoma/Carcinoma Prevention Program 3 (CaPP3) study presented at the International Cancer Prevention Conference in London, low-dose aspirin (100 mg) lowered the risk of colorectal cancer in patients with Lynch syndrome. Additionally, the use of aspirin lowered the risk of all cancers associated with Lynch syndrome.

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

Reference: Charles Bankhead. Low-Dose Aspirin Reduces Colon Cancer Risk in Patients With Lynch Syndrome. MedPage Today. Published January 27, 2025.

Cancer research benefits ALL populations! It is a gift to future generations of kids and grandkids. Remember, funding sc...
12/25/2025

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!

Did you know that by participating in ICARE you may be able to contribute to other research efforts?For example, ICARE h...
12/25/2025

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

12/24/2025

Did you know that about 80% of genomics data comes from European populations, yet they only make up about 16% of the world population? This bias means Europeans stand to benefit the most, while important associations for other ancestry groups may be missed.

Not including diverse populations in genomics research can further WIDEN disparities!

A new study presented at the American Society of Clinical Oncology (ASCO) annual meeting showed that Belzutifan treatmen...
12/24/2025

A new study presented at the American Society of Clinical Oncology (ASCO) annual meeting showed that Belzutifan treatment of VHL-related tumors durably shrinks tumors and may reduce the number of surgeries needed in patients with cancers associated with a von Hippel-Lindau (VHL) gene deletion or mutation.

Five-year follow-up findings showed the following response rates:
• Renal cell cancer: 70%
• Hemangioblastomas of the CNS: 50%
• Pancreatic neuroendocrine tumors (PNET): 90%

Learn more by reading the Renal & Urology News article: https://f.mtr.cool/oonicblnud

Reference: Sakhnovsky. Renal & Urology News. Belzutifan Provides Durable Response in Von Hippel Lindau-Related Cancers Such as RCC.

A new study among BRCA1/2 carriers without a prior breast cancer diagnosis, which included ICARE participants, showed th...
12/23/2025

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://pubmed.ncbi.nlm.nih.gov/41403285/

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

A mutation in both MUTYH genes can increase the risk for certain cancers. Early screening and regular checkups are key t...
12/23/2025

A mutation in both MUTYH genes 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/ddftkiawen

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

12/23/2025

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 the link in our bio!



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



Address

Nashville, TN
37212

Telephone

+16158752444

Website

Alerts

Be the first to know and let us send you an email when ICARE - Inherited Cancer Registry posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Share on Facebook Share on Twitter Share on LinkedIn
Share on Pinterest Share on Reddit Share via Email
Share on WhatsApp Share on Instagram Share on Telegram

Category

Our Story

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.