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, led by our colleague Dr. Sonya Reid, among over 1,000 women with HR+ HER2- breast cancer found higher proportio...
06/18/2026

A study, led by our colleague Dr. Sonya Reid, among over 1,000 women with HR+ HER2- breast cancer found higher proportions of high-risk HR+ HER2- early-stage breast cancer among Black participants. Other findings include:
• Basal-type tumors were more common in Black participants compared with White participants (11% vs. 4.8%)
• Those with basal-type tumors had lower 3-year recurrence-free survival compared to those with Luminal B-type (83.7% vs. 93.7%) and Luminal A-type tumors (83.7% vs. 96.5%)
• Those with high-risk, Luminal B- and Basal-type tumors had significantly worse 3-year outcomes compared to low-risk Luminal A-type tumors

These findings support the prognostic and potentially predictive importance of genomic testing to reduce racial survival disparities among Black women with early-stage breast cancer.

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

Reference: Reid et al. NPJ Breast Cancer. 2026; 12(1):68. PMID: 41857012.

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.

Cancer can affect us regardless of:• Whether we are male or female• Whether we are young or old• What our political beli...
06/18/2026

Cancer can affect us regardless of:
• Whether we are male or female
• Whether we are young or old
• What our political beliefs are
• What our scientific beliefs are

We all have cancer risks so let's work together to keep finding new cures for 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...
06/18/2026

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

The new NCCN Genetic/Familial High-Risk Assessment Guidelines Version 1.2026 (released June 16th, 2026) are now called: ...
06/18/2026

The new NCCN Genetic/Familial High-Risk Assessment Guidelines Version 1.2026 (released June 16th, 2026) are now called: Colorectal, Endometrial, Esophageal, and Gastric Cancer Guidelines

NOTE: Esophageal cancer newly added to name of this guideline!

In these guidelines, an entire section was added on hereditary esophageal cancer (see pages HESOPH-1 and HESOPH-2:
PRINCIPLES OF GENETIC RISK ASSESSMENT FOR ESOPHAGEAL CANCERS)

Criteria include those for:
• Squamous cell carcinoma
• Adenocarcinoma

Syndromes associated with increased risk of Esophageal Squamous Cell Carcinoma, for which screening endoscopy recommended:

Tylosis with esophageal cancer
• May be due to RHBDF2 gene
• Average age at presentation of 45 years
• Lifetime risk to age 80 of >95%

Fanconi anemia
• Risk is 500-700 fold that of the general population

To access these new guidelines, create a free account at NCCN.org and visit the following link:https://www.nccn.org/professionals/physician_gls/pdf/genetics_ceeg.pdf

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.

06/17/2026

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!

New NCCN Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, Esophageal, and Gastric Cancer Guidelines (Vers...
06/17/2026

New NCCN Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, Esophageal, and Gastric Cancer Guidelines (Version 1.2026) were just released on June 16th, 2026!

For the purpose of identifying Lynch syndrome, genetic testing is recommended for all patients with the following (regardless of age):
• colorectal cancer
• endometrial (uterine) cancer
• gastric (stomach) cancer
• any tumor showing mismatch repair deficiency

There was a ‘category 2b’ distinction for the below scenarios:
• colorectal cancer diagnosed >50 years
• gastric cancer diagnosed >50 years

Category 2b means that a treatment is considered appropriate by the panel, but is based on lower-level scientific evidence and does not have uniform consensus among the experts. Specifically, it requires at least 50-84% support from the committee, meaning there is no major disagreement, but also no overwhelming consensus.

Genetic testing (through multi-gene panel testing) was defined to include at a minimum:
• The following genes: APC (including APC promoter 1B), ATM, BMPR1A, BRCA1, BRCA2, CDH1, CTNNA1, Lynch syndrome genes (MLH1, MSH2, EPCAM, MSH6), PALB2, SMAD4, STK11, and TP53.
• The Panel recognizes that all of these genes have not been definitively linked to a raised risk of gastric cancer.
• Testing for KIT may also be considered in families where there is a clinical concern for GI stromal tumors (GIST).

To access these new guidelines, create a free account at NCCN.org and visit the following link:https://www.nccn.org/professionals/physician_gls/pdf/genetics_ceeg.pdf

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.

A study shows that women with high grade serous ovarian cancer who remain cancer free for 7 years or more had nearly the...
06/17/2026

A study shows that women with high grade serous ovarian cancer who remain cancer free for 7 years or more had nearly the same mortality risk as the general U.S. population. Of note, most of the women in this study had stage 3 ovarian cancer.

Those with homologous repair deficiency (HRD) ovarian tumors (which is present in BRCA1/2 carriers) had substantially higher survival than those without HRD, both at 5 and 10 years out from their diagnosis:
• Event-Free Survival at 5 years (24.3% versus 14.7%) and 10 years (15.5% versus 8.9%)
• Overall Survival at 5 years (54.6% vs 34.9%) and 10 years (28.4% vs 16.8%)

This means that once an ovarian cancer survivor has reached the 7 year mark and is cancer free, their mortality rates are similar to that of the U.S. general population.

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

Reference: De Vitis et al. JCO Oncol Adv. 2026;3(1):e2500142. PMID: 41918500

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...
06/17/2026

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/vlczfouomv

A mutation in TP53 can increase the risk for certain cancers. Early screening and regular checkups are key to staying ah...
06/16/2026

A mutation in TP53 can increase the risk for certain cancers. Early screening and regular checkups are key to staying ahead. For age-specific guidance and more, check out the full National Comprehensive Cancer Network (NCCN) guidelines by creating a FREE account at:
https://f.mtr.cool/qvdvsoezxp
https://f.mtr.cool/yhbpwywqiw

If you tested positive for TP53, 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/wokdzjmjka to enroll and receive care updates as new guidelines come out.

A new study (NHS-Galleri trial) tested whether a simple blood test could catch more cancers early. Bottom line: Stage 3 ...
06/16/2026

A new study (NHS-Galleri trial) tested whether a simple blood test could catch more cancers early.

Bottom line: Stage 3 and 4 cancers (together) were not lowered by this study, so this test is NOT ready for prime time yet! A small silver lining is that when looking at stage 4 cancers alone, there was a 14% reduction, which MIGHT be promising.

What does this mean?
• We know that the key to effective screening tests is to find cancers at an early rather than late stage.
• This study tells us that more work is needed before blood tests become routine screening.

Read the full story at: https://www.medpagetoday.com/meetingcoverage/asco/121498

Learn more about the NHS-Galleri trial at: https://clinicaltrials.gov/study/NCT05611632

Reference: Kuznar, W. (n.d.). Multicancer early detection test fails to reduce cancers detected at late stages: However, an increase in the detection of stage I/II cancers was observed.

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.

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