AXIN2-related polyposis

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ORPHA:401911OMIM:608615D12.6
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Overview

AXIN2-related polyposis is a rare inherited condition caused by changes (mutations) in the AXIN2 gene. This gene normally helps control cell growth in the body, particularly in the lining of the colon and in developing teeth. When the AXIN2 gene does not work properly, affected individuals develop multiple polyps (small growths) in the colon and rectum. These polyps are called adenomatous polyps, and over time they carry an increased risk of turning into colorectal cancer if not monitored and managed. In addition to colon polyps, many people with this condition also have problems with tooth development, including missing permanent teeth (a condition called oligodontia or hypodontia). Some individuals may also have sparse hair or other mild ectodermal features. The condition is sometimes referred to as oligodontia-colorectal cancer syndrome or familial adenomatous polyposis type 4. The number of polyps can vary widely between affected individuals, even within the same family. Some people develop dozens of polyps while others may have fewer. Because of the cancer risk, regular colonoscopy screening is essential. Treatment typically involves surveillance with colonoscopy, removal of polyps when found, and in some cases surgery to remove part or all of the colon if polyps become too numerous to manage. Dental treatment is also important for those with missing teeth, and may include dentures, bridges, or dental implants. Early diagnosis through genetic testing allows families to begin screening at the appropriate age and reduce the risk of cancer.

Also known as:

Key symptoms:

Multiple polyps in the colon and rectumMissing permanent teeth (oligodontia)Increased risk of colorectal cancerSparse or thin hairAbnormal tooth shape or sizeDelayed eruption of teethRectal bleeding from polypsChanges in bowel habitsAbdominal discomfort or crampingMild ectodermal abnormalities such as thin eyebrows

Clinical phenotype terms (7)— hover any for plain English
Adenomatous colonic polyposisHP:0005227Colorectal polyposisHP:0200063Colon cancerHP:0003003Neoplasm of the rectumHP:0100743Ectodermal dysplasiaHP:0000968Abnormal odontoid tissue morphologyHP:3000050
Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Variable

Can begin at different ages, from infancy through adulthood

Orphanet ↗OMIM ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for AXIN2-related polyposis.

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No actively recruiting trials found for AXIN2-related polyposis at this time.

New trials open frequently. Follow this disease to get notified.

Search ClinicalTrials.gov ↗Join the AXIN2-related polyposis community →

No specialists are currently listed for AXIN2-related polyposis.

View NORD Rare Disease Centers ↗Undiagnosed Disease Network ↗

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to AXIN2-related polyposis.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about AXIN2-related polyposis

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Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

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Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.At what age should colonoscopy screening begin for me or my child?,How often should colonoscopies be repeated?,What are the signs that surgery to remove the colon might be needed?,Should other family members be tested for the AXIN2 gene change?,What dental treatment options are available for missing teeth?,Are there any clinical trials or new treatments being studied for this condition?,What lifestyle changes can help reduce my colorectal cancer risk?

Common questions about AXIN2-related polyposis

What is AXIN2-related polyposis?

AXIN2-related polyposis is a rare inherited condition caused by changes (mutations) in the AXIN2 gene. This gene normally helps control cell growth in the body, particularly in the lining of the colon and in developing teeth. When the AXIN2 gene does not work properly, affected individuals develop multiple polyps (small growths) in the colon and rectum. These polyps are called adenomatous polyps, and over time they carry an increased risk of turning into colorectal cancer if not monitored and managed. In addition to colon polyps, many people with this condition also have problems with tooth de

How is AXIN2-related polyposis inherited?

AXIN2-related polyposis follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.